Heather has just finished her first 5 days of Temador; and although it could have been worse, it was no picnic for her. She takes the pills at night before bed to help avoid being sick, but she was sick all night her first night anyway. The following day (Tuesday) she slept off and on between being sick. But, she had to take the pills again at night. She came to our house on Tuesday so that she was here in case she got so sick again. Tuesday night brought another night of being sick and achy. By Wednesday, she was miserable, so off to Dr. Popa's we went. We found out that she was dehydrated - even though she drinks water nonstop. In addition, she was low on potassium. So, she had a 2 hour saline with potassium and more anti-nausea medication infusion. I learned what a dehydrated tongue looks like as well as veins. We are all rookies at this rodeo, and we know we have a lot to learn.
Heather returned to work on Thursday, but continued to feel very tired. Friday was the same. She slept from Friday night at 9:00 until Saturday at noon. She was up for about 1 hour, and then she slept another 3-4 hours. She just needs to sleep and sleep and sleep. And, she is not eating. She ate about 2 bites of applesauce and a few sips of soup today. She is not eating because she is not hungry and feels sick if she does. She has begun to lose weight, but I think once the initial chemo has run its course, she might feel better for a couple of weeks before it all starts again. After her 23 days off, her next treatment will be 390 mg instead of 285. In addition to her chemo treatment reactions, her Raynaud's phenomenon is driving her crazy! Her feet and hands are itching, and last night Heather was miserable with it. The Raynauds usually does bother her more this time of year, but on top of everything else, it is one more annoying issue.
After her next round, we will be headed to San Francisco for another MRI. We hope to learn more between now and then so that we have more questions in our quest for answers - answers that will someday help Heather.
Our next big fundraiser is going to be February 6 and 7 at the UNO hockey games. The players will wear special jerseys for brain cancer and those will be auctioned during the game on Saturday. In addition, during January and February 6 and 7, we will raise money with people putting money in players and coaches' jars to see who raises the most money. That person will have his head shaved at center ice after the game. More details will emerge soon, but I think it will be a fun event.
I don't know if I will write again before the holidays, so I wish you all a happy holiday season!
Saturday, December 13, 2008
Thursday, December 4, 2008
From Hawaii to Reality
Hawaii was a special treat for our family! (Although we missed Amy, we will make certain she is able to join us on our next vacation.) Heather was able to relax and sleep and sleep and sleep. The radiation finally caught up with her, and she remains very tired. Dr. Popa said today that Heather's reaction to the radiation is normal even though it is a bit "later" than some people's. She was not tired during the last two weeks of radiation as many people are; but about a week after it, she became very tired and still sleeps a lot. Dr. Popa also said that since Heather tolerated the low-dose Temador with her radiation, she feels Heather will also tolerate the higher dose of Temador. Heather's dose of Temador during radiation was 180, but she will begin her regime with 285 for the first 5 days and then go to 380 (I think). She will take her Temador for 5 days and be off for 23 days; then it starts over so it is a 28-day cycle. Tiredness is the most common side effect along with nausea. However, Heather will take anti-nausea medication an hour before taking Temador and will take the Temador about 1 hour before bed. Hopefully, she can sleep through any sickness she may encounter. She will have her blood checked weekly for any signs of other side effects. Dr. Popa also reinforced the idea that Heather could be on Temador for over 3 years if she tolerates it. Along with Temador, Heather must once again begin her anti-acid, anti-nausea, and antibiotics and continue her vitamins. She has been so happy not taking all the medications throughout the day; now she realizes it could be for another 3 or more years if all goes well - sounds ironic to me. But, her attitude continues to be "whatever it takes" to become cancer free!
We are planning our next San Francisco trip for January. UCSF Medical Center has a different MRI machine - one that Omaha does not have. If all goes well, we may not return to San Francisco for 4 months after January. Dr. Popa is perfectly OK with us going to San Francisco, and that makes us all feel more comfortable. I am feeling more and more relaxed with Dr. Popa and more and more confident with her as Heather's oncologist. It isn't easy "turning over" your child to someone else - even a doctor. But I have no choice, so I must find confidence in the person who is treating her. I cannot explain how important that is - it has to be a feeling of belief and hope.
So far, Heather is back at work full-time. She is grateful to her employers (Ted and Kathy) and all the people she works with who are supportive of her absences from work. She hopes that she does not miss more work because of her Temador regime, and will only have to miss work because of her San Francisco trips.
So, now that we have returned to cold and snow, we reflect on our wonderful time in Hawaii as a family having fun in the sun. We were able to relax, read, share, sleep, and escape our reality. Our daily routines have returned and worrying and thinking about Heather is a part of that. As hard as I try, I very rarely skip a minute without Heather entering my mind. But, because I always hold her close to my heart and mind, I am always researching for new approaches to brain cancer. I continue to learn and continue to ask questions. I will NEVER give up hope because I know that someday there will be a cure and that Heather will be a recipient of that cure!
We are planning our next San Francisco trip for January. UCSF Medical Center has a different MRI machine - one that Omaha does not have. If all goes well, we may not return to San Francisco for 4 months after January. Dr. Popa is perfectly OK with us going to San Francisco, and that makes us all feel more comfortable. I am feeling more and more relaxed with Dr. Popa and more and more confident with her as Heather's oncologist. It isn't easy "turning over" your child to someone else - even a doctor. But I have no choice, so I must find confidence in the person who is treating her. I cannot explain how important that is - it has to be a feeling of belief and hope.
So far, Heather is back at work full-time. She is grateful to her employers (Ted and Kathy) and all the people she works with who are supportive of her absences from work. She hopes that she does not miss more work because of her Temador regime, and will only have to miss work because of her San Francisco trips.
So, now that we have returned to cold and snow, we reflect on our wonderful time in Hawaii as a family having fun in the sun. We were able to relax, read, share, sleep, and escape our reality. Our daily routines have returned and worrying and thinking about Heather is a part of that. As hard as I try, I very rarely skip a minute without Heather entering my mind. But, because I always hold her close to my heart and mind, I am always researching for new approaches to brain cancer. I continue to learn and continue to ask questions. I will NEVER give up hope because I know that someday there will be a cure and that Heather will be a recipient of that cure!
Thursday, November 13, 2008
From San Francisco to Hawaii
We just returned from San Francisco, and we feel the news is good - if "status quo" is good. Heather's tumor has not grown, so that is good. From what we were told, the tumor never "shrinks"; the cells just die. When the cells begin to grow again, the Temador attacks / kills them. The trick seems to be to make certain the Temador is taken when the cells are starting to grow. I think it is time for more research. We always learn so much with each visit! We will return to San Francisco the end of January - and I am certain we will return with more answers, but with more questions as well.
Heather seems to be doing well. She is happy with "status quo" - as we all are. For some reason this trip was really bothering her. She had a few bad days thinking about the trip; I think because she heard bad news the last time we were there maybe she was fearful she would hear bad news again. But, with a sigh of relief, we went to lunch to celebrate with my sister Jill and my best friend from high school, Tricia.
Saturday (11/15) the Omaha Lancer Hockey Organization held a fundraiser for brain cancer. The players wore special "brain cancer" jerseys designed by Bill Nervig (Lancer's trainer). Each jersey was auctioned off during the game. These jerseys were really "sweet." Obviously, I have never seen a jersey designed for brain cancer! I wonder if these are the first ones made for it? Unfortunately, the team lost in a shoot-out, so that was the only downside to the benefit. Once again, we have been amazed at the support the community has given to our cause.
Heather's cousin Aaron is doing great work in Lincoln promoting Leap-for-a-Cure. I hope to have more news on his efforts soon.
I don't think there will be much to write about until after our Hawaii trip. Heather is so excited about the trip, which we think is going to be special before she starts her chemotherapy. We learned that she could be on Temador for 2 - 3 years if she tolerates it. Wow, that is a long time! Of course, we think she will handle it well as she handled radiation and low-dose chemo very well. Our fingers are once again crossed for her health, happiness, and safety.
Heather seems to be doing well. She is happy with "status quo" - as we all are. For some reason this trip was really bothering her. She had a few bad days thinking about the trip; I think because she heard bad news the last time we were there maybe she was fearful she would hear bad news again. But, with a sigh of relief, we went to lunch to celebrate with my sister Jill and my best friend from high school, Tricia.
Saturday (11/15) the Omaha Lancer Hockey Organization held a fundraiser for brain cancer. The players wore special "brain cancer" jerseys designed by Bill Nervig (Lancer's trainer). Each jersey was auctioned off during the game. These jerseys were really "sweet." Obviously, I have never seen a jersey designed for brain cancer! I wonder if these are the first ones made for it? Unfortunately, the team lost in a shoot-out, so that was the only downside to the benefit. Once again, we have been amazed at the support the community has given to our cause.
Heather's cousin Aaron is doing great work in Lincoln promoting Leap-for-a-Cure. I hope to have more news on his efforts soon.
I don't think there will be much to write about until after our Hawaii trip. Heather is so excited about the trip, which we think is going to be special before she starts her chemotherapy. We learned that she could be on Temador for 2 - 3 years if she tolerates it. Wow, that is a long time! Of course, we think she will handle it well as she handled radiation and low-dose chemo very well. Our fingers are once again crossed for her health, happiness, and safety.
Thursday, October 30, 2008
End of Radiation Road
33 rounds; 33 trips; 33 visits. It's over! For as happy as Heather and all of us are to have radiation completed, the last day left us a little sad. Saying good-bye to the technicians, saying good-bye to the other patients - it's just a little sad. You visit with people everyday and become very interested in their lives, their journey, their personal battle. We wish everyone the best of luck in their fight. But we will never really know how they do.
Heather is doing well. She had her first full day of work in over 6 weeks today, so she is tired. She is so grateful to her employers for being understanding and supportive. Because of their support, Heather did not suffer extra stress about her job. Currently, her head is tender, much like a sunburn, so she does not like to wear anything on her head. Getting ready in 10 minutes is a plus as well. And, she has a great shaped head, so she looks pretty good bald. However, she might get cold this winter :)
I said in my last entry that I would talk about some of our fundraising events. First, after our "Wear Gray for a Day" event in September, Reagan Elementary School had a Penny War among some of its classes. Students also sold gray wristbands . Both ideas raised about $1,200! Because of Reagan Elementary, my department decided to have a Penny War among our English classes during homecoming week. Our students raised $8,200! Then our DECA students raised another $1,000 during the Powder Puff game. Student Council and a "Miracle Minute" added some more. All together, Millard North High School raised $10,500 for Leap-for-a-Cure!
Monster Bash was so fun! We think about 200 people attended and I met so many new people -some who have a connection to brain cancer and some who just want to support our cause. We are already thinking about next year's bash :) We have some ideas to make the event better as well as what we want to keep the same. I know - I just need to relax a little. I only have 12 months! Thunder Alley hosted the event and I cannot thank Ted and Kathy enough for all their efforts to make it a success. In addition, the classic rock band "Charlie in the Box" played for the event and donated the time. Everyone helped to make this a special awareness event.
Today is Old Chicago Restaurants' "Cookies for a Cure" day. Old Chicago has been a wonderful support for our cause. First, three of the restaurants each donated 8 pizzas to reward the winning teacher's classes for the Penny War at Millard North. Then the restaurants planned for the "Cookies for a Cure" fundraiser. I'm proud to be involved with this fine organization! Plus, I bought a lot of delicious cookies :)
The next event is November 15 at Mid-America Center. The Lancer Hockey team has purchased special brain cancer jerseys. After the game, the jerseys will be auctioned and all proceeds will go to Leap-for-a-Cure. Another fun evening is approaching. . .
We have been so fortunate to have so many people supporting Leap-for-a-Cure. From students and staff at Reagan Elementary and Millard North High School, to Thunder Alley, to Old Chicago, to Lancer Hockey - we are so lucky to be surrounded by so many wonderful people.
I will continue to fight for the cause no matter how long it takes to find a cure. It has been too long without new steps, and I am getting impatient. I met so many good people the other night, and each one deserves to live his / her life to the fullest. Each one has a story. Each one has a fight. Our story and our fight is no different. However, this story has hit home - my home. We are no longer someone else.
Heather is doing well. She had her first full day of work in over 6 weeks today, so she is tired. She is so grateful to her employers for being understanding and supportive. Because of their support, Heather did not suffer extra stress about her job. Currently, her head is tender, much like a sunburn, so she does not like to wear anything on her head. Getting ready in 10 minutes is a plus as well. And, she has a great shaped head, so she looks pretty good bald. However, she might get cold this winter :)
I said in my last entry that I would talk about some of our fundraising events. First, after our "Wear Gray for a Day" event in September, Reagan Elementary School had a Penny War among some of its classes. Students also sold gray wristbands . Both ideas raised about $1,200! Because of Reagan Elementary, my department decided to have a Penny War among our English classes during homecoming week. Our students raised $8,200! Then our DECA students raised another $1,000 during the Powder Puff game. Student Council and a "Miracle Minute" added some more. All together, Millard North High School raised $10,500 for Leap-for-a-Cure!
Monster Bash was so fun! We think about 200 people attended and I met so many new people -some who have a connection to brain cancer and some who just want to support our cause. We are already thinking about next year's bash :) We have some ideas to make the event better as well as what we want to keep the same. I know - I just need to relax a little. I only have 12 months! Thunder Alley hosted the event and I cannot thank Ted and Kathy enough for all their efforts to make it a success. In addition, the classic rock band "Charlie in the Box" played for the event and donated the time. Everyone helped to make this a special awareness event.
Today is Old Chicago Restaurants' "Cookies for a Cure" day. Old Chicago has been a wonderful support for our cause. First, three of the restaurants each donated 8 pizzas to reward the winning teacher's classes for the Penny War at Millard North. Then the restaurants planned for the "Cookies for a Cure" fundraiser. I'm proud to be involved with this fine organization! Plus, I bought a lot of delicious cookies :)
The next event is November 15 at Mid-America Center. The Lancer Hockey team has purchased special brain cancer jerseys. After the game, the jerseys will be auctioned and all proceeds will go to Leap-for-a-Cure. Another fun evening is approaching. . .
We have been so fortunate to have so many people supporting Leap-for-a-Cure. From students and staff at Reagan Elementary and Millard North High School, to Thunder Alley, to Old Chicago, to Lancer Hockey - we are so lucky to be surrounded by so many wonderful people.
I will continue to fight for the cause no matter how long it takes to find a cure. It has been too long without new steps, and I am getting impatient. I met so many good people the other night, and each one deserves to live his / her life to the fullest. Each one has a story. Each one has a fight. Our story and our fight is no different. However, this story has hit home - my home. We are no longer someone else.
Saturday, October 25, 2008
Pre-Monster Bash
Tuesday, October 28, is a day we are all looking forward to. We have worked to promote the evening and we have a good feeling about its success. Heather is getting so excited, so that also makes me happy. She and I spent the afternoon buying balloons, table clothes, raffle tickets, etc. for the event. We are so ready . . .
Last week Heather was told she has Monday, Tuesday, and Wednesday radiation treatments left. We had planned that Friday would be her last day, but she is doing "boost" right now, and that requires her to have three more days of it. We will celebrate her first radiation free day at Old Chicago and buying cookies for a cure! (Thursday, October 30)
So far, she has tolerated everything so well. She is no longer sick; she went back on her steroids and that took care of the headaches and body aches. However,Dr. Popa told her to try to get off of them if she can as the steroids will affect her stomach. She is trying.
Sometimes I look at her and forget she is sick because she is doing so well. Her coloring is good; her health is good; her blood work is good; and her attitude is good. She IS going to beat this.
When she is finished next Wednesday, she is free of all medical appointments until her Wednesday, November 12 MRI in San Francisco. As I have said before, I can hardly wait to get good news. Then, we will be off to Hawaii for a week and then she starts the year-long chemotherapy (Temador) at much higher doses than she takes now. But, we are still hopeful she will tolerate it all well. We are ready to handle anything that happens - good or bad - and move forward. As Heather always says, "It's temporary."
Heather has been such an inspiration to me. Her attitude and decision to take charge of her situation has been a lesson for me. I learn from her every day. I try so hard NOT to dwell on unpleasantness, negative situations, and difficult experiences. Life is not perfect, and we can only deal with what is given to us. I have always told my children that it isn't WHAT happens; it is HOW we react to WHAT happens that makes us who we are. If that is as true as I believe, Heather is going to be a role model for so many people. She has handed this situation with such grace and dignity. I know I have said it before, but I cannot ignore this truth.
Next time I will devote time to Leap-for-a-Cure and the successes of our efforts. That is something else for which I am proud.
Last week Heather was told she has Monday, Tuesday, and Wednesday radiation treatments left. We had planned that Friday would be her last day, but she is doing "boost" right now, and that requires her to have three more days of it. We will celebrate her first radiation free day at Old Chicago and buying cookies for a cure! (Thursday, October 30)
So far, she has tolerated everything so well. She is no longer sick; she went back on her steroids and that took care of the headaches and body aches. However,Dr. Popa told her to try to get off of them if she can as the steroids will affect her stomach. She is trying.
Sometimes I look at her and forget she is sick because she is doing so well. Her coloring is good; her health is good; her blood work is good; and her attitude is good. She IS going to beat this.
When she is finished next Wednesday, she is free of all medical appointments until her Wednesday, November 12 MRI in San Francisco. As I have said before, I can hardly wait to get good news. Then, we will be off to Hawaii for a week and then she starts the year-long chemotherapy (Temador) at much higher doses than she takes now. But, we are still hopeful she will tolerate it all well. We are ready to handle anything that happens - good or bad - and move forward. As Heather always says, "It's temporary."
Heather has been such an inspiration to me. Her attitude and decision to take charge of her situation has been a lesson for me. I learn from her every day. I try so hard NOT to dwell on unpleasantness, negative situations, and difficult experiences. Life is not perfect, and we can only deal with what is given to us. I have always told my children that it isn't WHAT happens; it is HOW we react to WHAT happens that makes us who we are. If that is as true as I believe, Heather is going to be a role model for so many people. She has handed this situation with such grace and dignity. I know I have said it before, but I cannot ignore this truth.
Next time I will devote time to Leap-for-a-Cure and the successes of our efforts. That is something else for which I am proud.
Tuesday, October 14, 2008
Ready, Set, SHAVE
It's gone - all gone. Heather's patience with her hair, rather the lack of, drove her to have me shave her head. If I thought Jon would be reading this, I would never tell this story. We shaved her head with Jon's electric razor. We don't have clippers, and Heather did not want to wait another minute. It's a good thing that Heather covers her head with hats and scarves when in public. How can a shaved head have divots?
She is almost finished with her 5th week of radiation and chemo. She remains in good spirits, good health, and relatively good moods. She has been told that her 5th and 6th weeks of radiation will probably be her worst for being tired; however, so far so good. She may be dragging a little, but not enough to interfere with work or life in general.
I may have spoke a little too early. I started the entry Tuesday night while at parent / teacher conferences. When I came home, Heather was not feeling well. She said her chest felt heavy, her head hurt a little, she had begun to bruise, and she went to bed. Wednesday she began to feel worse and left work early to come home and nap. By Wednesday night, she was weepy with discomfort. Thursday, the doctor's office scheduled an immediate CT-scan - possible blood clot. Good news - no blood clot. Blood tests will hopefully give us a clue. Tonight, she feels better.
Next week is Heather's last week of chemotherapy and radiation. Yeah! We head to San Francisco November 12 for a follow-up to her six-week treatment. I am so looking forward to hearing that the tumor has shrunk!
When Heather was lying in bed feeling ill, I saw her little hairless head peeping from the covers. I held her, rubbed her head, and told her how much I love her. As I watched my little girl
become scared for the first time throughout this horrible ordeal, my tears welled and my composure melted. We have been so lucky so far. She has tolerated everything so well; I am completely selfish now. I never want her to suffer!
I know when she begins her new chemotherapy regime beginning of December, it will be an all new "game." The Temodar will be doubled from what she takes now. I know it will be a miracle if she does not get sick or have bad days. In fact, I am expecting it. I just don't want to think about it.
She is almost finished with her 5th week of radiation and chemo. She remains in good spirits, good health, and relatively good moods. She has been told that her 5th and 6th weeks of radiation will probably be her worst for being tired; however, so far so good. She may be dragging a little, but not enough to interfere with work or life in general.
I may have spoke a little too early. I started the entry Tuesday night while at parent / teacher conferences. When I came home, Heather was not feeling well. She said her chest felt heavy, her head hurt a little, she had begun to bruise, and she went to bed. Wednesday she began to feel worse and left work early to come home and nap. By Wednesday night, she was weepy with discomfort. Thursday, the doctor's office scheduled an immediate CT-scan - possible blood clot. Good news - no blood clot. Blood tests will hopefully give us a clue. Tonight, she feels better.
Next week is Heather's last week of chemotherapy and radiation. Yeah! We head to San Francisco November 12 for a follow-up to her six-week treatment. I am so looking forward to hearing that the tumor has shrunk!
When Heather was lying in bed feeling ill, I saw her little hairless head peeping from the covers. I held her, rubbed her head, and told her how much I love her. As I watched my little girl
become scared for the first time throughout this horrible ordeal, my tears welled and my composure melted. We have been so lucky so far. She has tolerated everything so well; I am completely selfish now. I never want her to suffer!
I know when she begins her new chemotherapy regime beginning of December, it will be an all new "game." The Temodar will be doubled from what she takes now. I know it will be a miracle if she does not get sick or have bad days. In fact, I am expecting it. I just don't want to think about it.
Saturday, October 4, 2008
Mid-Treatment
This week - the middle of the road for radiation - has brought another journey to our lives: Heather losing her hair. I have always read that people just wake up one day and their hair starts falling out in clumps. Well, that's true. Heather's hair started to fall out in the shower one morning, and it hasn't stopped since. As with all her other experiences in this journey, she has handled it with grace and optimism. Her take on what she goes through is that it is temporary. She feels our world is too superficial and plastic anyway, and hair only adds to that. Besides, she hopes her hair grows back thicker :)
Seriously, she did have a some tears and fear when the clumps landed on the shower floor, but her dad was there to add some comfort. She called me and said, "I want it all cut off!" We went to radiation that day and visited with another patient who has already lost her hair. She shared with us that if it all doesn't fall out, there will be strands left in spots. That grossed out Heather, and she was even more adamant to get hers cut. So, on Thursday, October 2, Heather sat in Penny's chair and said, "Cut it." Again she amazed me. Penny offered a private room, but Heather wondered why. With a cute twist, she reminded us that she has nothing to hide. The cut is short, but stylish and cute. Everyday she loses more hair and is now wearing head scarves in public. Jon always uses his thinning (bald) spot on the top of his head as evidence that his daughters have stressed him too much; now Heather uses her bald spot as proof that her father has given her too much stress! She named her spot DAD.
Sometimes Heather will lie on the couch resting her head on my lap as I hold her and rub her sore head. She isn't much for melodramatics, but she still needs her mom sometimes. I tell her that I remember her as a beautiful bald baby and she is now a beautiful semi-bald woman and I couldn't love her any more than I do. There really is something about a parent's love that cannot be defined.
We met with the radiation oncologist on Friday, and he and his nurse think Heather is doing very well. She has begun taking steroids to relieve some swelling due to the radiation but may taper a bit as early as next week. I don't like her on the medication, so I can hardly wait until she can get off. The swelling decision was made because of some uncharacteristic coordination problems - falling and tripping in the last week. Michele tried to convince the radiation oncologist that Heather has always been clumsy; Heather and I think Michele is goofy. I'm certain he thinks we are all nuts.
And, we are still fortunate to have time for play. So, off to Thunder Alley on Saturday night to watch NU football with friends. By halftime the NU game was a dud and we had eaten all our stomachs could hold, so Heather thought ending the night with our traditional fierce laser-tag competition - girls against the boys - would be appropriate. And, the girls finally won! No matter how many times we play, we always laugh ourselves silly! And laughter is wonderful medicine.
Seriously, she did have a some tears and fear when the clumps landed on the shower floor, but her dad was there to add some comfort. She called me and said, "I want it all cut off!" We went to radiation that day and visited with another patient who has already lost her hair. She shared with us that if it all doesn't fall out, there will be strands left in spots. That grossed out Heather, and she was even more adamant to get hers cut. So, on Thursday, October 2, Heather sat in Penny's chair and said, "Cut it." Again she amazed me. Penny offered a private room, but Heather wondered why. With a cute twist, she reminded us that she has nothing to hide. The cut is short, but stylish and cute. Everyday she loses more hair and is now wearing head scarves in public. Jon always uses his thinning (bald) spot on the top of his head as evidence that his daughters have stressed him too much; now Heather uses her bald spot as proof that her father has given her too much stress! She named her spot DAD.
Sometimes Heather will lie on the couch resting her head on my lap as I hold her and rub her sore head. She isn't much for melodramatics, but she still needs her mom sometimes. I tell her that I remember her as a beautiful bald baby and she is now a beautiful semi-bald woman and I couldn't love her any more than I do. There really is something about a parent's love that cannot be defined.
We met with the radiation oncologist on Friday, and he and his nurse think Heather is doing very well. She has begun taking steroids to relieve some swelling due to the radiation but may taper a bit as early as next week. I don't like her on the medication, so I can hardly wait until she can get off. The swelling decision was made because of some uncharacteristic coordination problems - falling and tripping in the last week. Michele tried to convince the radiation oncologist that Heather has always been clumsy; Heather and I think Michele is goofy. I'm certain he thinks we are all nuts.
And, we are still fortunate to have time for play. So, off to Thunder Alley on Saturday night to watch NU football with friends. By halftime the NU game was a dud and we had eaten all our stomachs could hold, so Heather thought ending the night with our traditional fierce laser-tag competition - girls against the boys - would be appropriate. And, the girls finally won! No matter how many times we play, we always laugh ourselves silly! And laughter is wonderful medicine.
Saturday, September 27, 2008
4 Weeks Left!
So far, so good! Heather's radiation and chemo treatments have not affected her too much so far. She is beginning to be a little more tired and her scalp is beginning to itch and to feel a little "sunburned," but she is doing well. She has reported that her coordination is a little off and she may be forgetting a little more than usual, but she still feels in control and happy and hopeful. She keeps a daily journal and she records everything of importance - from medication to headaches to nausea to important information at work. She does not want anything to be forgotten. She will always have her journal to check. What more can a mom ask for at this point? Every Monday Dr. Popa checks her blood and every Friday Dr. Huang checks with her about her radiation. She is in good hands. We are going to San Francisco in mid-November to visit with Dr. Chang again. Once we see Heather's updated MRI, we will obviously know a lot more.
It seems odd to me that so little is ever shared about brain cancer. Since our family has gone through this, I have heard from so many people who are either battling with it now or who have lost a loved one to it. If this cancer is not one of the "biggies," I feel Omaha must have more than its share of people who have been affected with it. Through this website, I have heard from three people I have never met. Through our "Wear Gray for a Day" campaign, I have heard from five people who have been or are currently affected with it. And through word of mouth, I have heard of another four. I think that is A LOT considering I don't know that many people. Then I was thinking about all the people that I have not heard from or about. Too many, just too many. Why has there not been more improvements in treatments for brain cancer? The funding just isn't there! More reason to spread the word. What if there were two or three hospitals in the country that just focused on ONE type of cancer cure? And another two to three that focused only on another type of cancer. Eventually, they would all work together to find a cure for each specific type instead of a little research here and a little research there. Are all cancer cells different? Why can't there be a cure for cancer in general? I know so little.
Our fundraising efforts seem to be going well. I am impatient. I think big and sometimes have to realize that baby steps come first. But, I am so proud of what so many people have done in such a short amount of time. I am trying to wait until the end of December to see how much we have raised. As donations go to the foundation, I do not know about them. I can get that information whenever I ask for it, but I just have not done that yet. I am waiting for our three October fundraising events for sure: Pampered Chef, Monster Bash, and Old Chicago's event. Maybe then I will ask. My next effort is to start writing grants for matching funds. I found out that I have to prove we can raise money on our own before we will even be considered for a matching grant in most cases.
I talked with Jeff Daley today, and Old Chicago restaurants in Omaha are doing a fundraising on Thursday, October 30. All five locations are going to donate 100% of all cookies sales for that day to Leapforacure! Heather worked at three of the locations in younger years, so I am thrilled that Old Chicago is going to participate in a fundraising event for brain cancer. Let's all go out to eat at Old Chicago on Thursday, October 30 - and order a cookie dessert!
Tonight Heather fell out of the hot tub - well, maybe she tripped or slipped? Although we all laughed, I am concerned about those "little" falls in her life right now. I am always asking myself if it is the radiation or just a normal off-balance fall. She has had three in one week though. At least she finds humor in them :)
We are now also putting a cream on sore spots on her head. So far she only has about two areas that drive her crazy with itching. But we put cream on those spots and then her hair is greasy. So, back to the hair scarves. Without the scarves, she looks like a cockatoo because her hair from surgery is growing back - straight up in the air!
My friend told me today about a new trial with laser that is being done at the Cleveland Clinic and University Hospital in Cleveland. So far, only one person has completed the trial; next week two more will. The laser's heat burns the cancer cells and avoids all other brain cells, so allegedly good cells are not bothered. But the trial is just starting and only with Stage IV patients. Maybe there will be some promise for the future though.
Tonight Heather and I decided she needs to show Dr. Popa her (Heather's) left eye. It is all red. We thought it may be Michele's cat - we are currently Humane Society West - but Heather has stayed away from Tuffy-Kat for two days, and it is only her left eye. I told her to keep her head elevated and to make certain her journal is up-to-date so that she does not forget to share this with Dr. Popa tomorrow. I hope we are concerned for nothing except allergies. Funny, we never ignore anything with Heather anymore. Everything could mean something. In fact, Mike has been a little sick, so Dr. Daryani told him to stay away from Heather. She moved back in with us last week until he is on the mend. Even a little cold is a BIG cold to Heather. Every time one of my students "hacks up a lung," I cringe and reach for my hand sanitizer! The other day I asked a student if he was okay because he kept coughing and coughing up phlegm. He said, "No, I have been sick for two weeks." I wish he would stay home or go to the doctor.
We were able to enjoy the wonderful weather this weekend. Heather, Mike, Jon, and I went to the Husker game Saturday night. We had a small tailgate party with Jon's dad and cousins before the game. I'm so happy Heather enjoyed her day, but she paid for it today. She slept four hours this afternoon. She really needs extra sleep now.
Thank you for reading the blog. I think it offers some therapy for me.
It seems odd to me that so little is ever shared about brain cancer. Since our family has gone through this, I have heard from so many people who are either battling with it now or who have lost a loved one to it. If this cancer is not one of the "biggies," I feel Omaha must have more than its share of people who have been affected with it. Through this website, I have heard from three people I have never met. Through our "Wear Gray for a Day" campaign, I have heard from five people who have been or are currently affected with it. And through word of mouth, I have heard of another four. I think that is A LOT considering I don't know that many people. Then I was thinking about all the people that I have not heard from or about. Too many, just too many. Why has there not been more improvements in treatments for brain cancer? The funding just isn't there! More reason to spread the word. What if there were two or three hospitals in the country that just focused on ONE type of cancer cure? And another two to three that focused only on another type of cancer. Eventually, they would all work together to find a cure for each specific type instead of a little research here and a little research there. Are all cancer cells different? Why can't there be a cure for cancer in general? I know so little.
Our fundraising efforts seem to be going well. I am impatient. I think big and sometimes have to realize that baby steps come first. But, I am so proud of what so many people have done in such a short amount of time. I am trying to wait until the end of December to see how much we have raised. As donations go to the foundation, I do not know about them. I can get that information whenever I ask for it, but I just have not done that yet. I am waiting for our three October fundraising events for sure: Pampered Chef, Monster Bash, and Old Chicago's event. Maybe then I will ask. My next effort is to start writing grants for matching funds. I found out that I have to prove we can raise money on our own before we will even be considered for a matching grant in most cases.
I talked with Jeff Daley today, and Old Chicago restaurants in Omaha are doing a fundraising on Thursday, October 30. All five locations are going to donate 100% of all cookies sales for that day to Leapforacure! Heather worked at three of the locations in younger years, so I am thrilled that Old Chicago is going to participate in a fundraising event for brain cancer. Let's all go out to eat at Old Chicago on Thursday, October 30 - and order a cookie dessert!
Tonight Heather fell out of the hot tub - well, maybe she tripped or slipped? Although we all laughed, I am concerned about those "little" falls in her life right now. I am always asking myself if it is the radiation or just a normal off-balance fall. She has had three in one week though. At least she finds humor in them :)
We are now also putting a cream on sore spots on her head. So far she only has about two areas that drive her crazy with itching. But we put cream on those spots and then her hair is greasy. So, back to the hair scarves. Without the scarves, she looks like a cockatoo because her hair from surgery is growing back - straight up in the air!
My friend told me today about a new trial with laser that is being done at the Cleveland Clinic and University Hospital in Cleveland. So far, only one person has completed the trial; next week two more will. The laser's heat burns the cancer cells and avoids all other brain cells, so allegedly good cells are not bothered. But the trial is just starting and only with Stage IV patients. Maybe there will be some promise for the future though.
Tonight Heather and I decided she needs to show Dr. Popa her (Heather's) left eye. It is all red. We thought it may be Michele's cat - we are currently Humane Society West - but Heather has stayed away from Tuffy-Kat for two days, and it is only her left eye. I told her to keep her head elevated and to make certain her journal is up-to-date so that she does not forget to share this with Dr. Popa tomorrow. I hope we are concerned for nothing except allergies. Funny, we never ignore anything with Heather anymore. Everything could mean something. In fact, Mike has been a little sick, so Dr. Daryani told him to stay away from Heather. She moved back in with us last week until he is on the mend. Even a little cold is a BIG cold to Heather. Every time one of my students "hacks up a lung," I cringe and reach for my hand sanitizer! The other day I asked a student if he was okay because he kept coughing and coughing up phlegm. He said, "No, I have been sick for two weeks." I wish he would stay home or go to the doctor.
We were able to enjoy the wonderful weather this weekend. Heather, Mike, Jon, and I went to the Husker game Saturday night. We had a small tailgate party with Jon's dad and cousins before the game. I'm so happy Heather enjoyed her day, but she paid for it today. She slept four hours this afternoon. She really needs extra sleep now.
Thank you for reading the blog. I think it offers some therapy for me.
Tuesday, September 16, 2008
2 down and 28 to go!
Heather had her first radiation therapy yesterday - Monday, Sept. 15. She was supposed to take her chemo 1 hour before, but her chemo never arrived. What I thought was a disaster yesterday is OK today. I did not think that her first day would "hit" me as it did. So when I found out the "mail order" package did not arrive, I think anything that happened after that did not really matter. I was going to cry regardless. Crying in itself is OK, but when someone cries in front of a group of students during study hall - that is . . . difficult. The harder I tried to cover it up, the more my tears "backed up." And then I was OK until a nice student said, "Are you OK?" There is hope in the future. These students were genuinely kind and concerned - or maybe just scared that I was going crazy. I prefer kind and concerned.
Anyway, Heather managed the first treatment just fine. She did not feel as claustrophobic as she thought she would in her mask, which keeps her head from moving. The mask was molded to fit her head last week. She had some X-Rays and minor adjustments - then her 10-minute radiation. While she was starting, she heard EJ from The Kat radio station in the background. Instead of music, EJ was talking about Heather and Leapforacure. That HAS to be a good sign! We talked with her neurosurgeon - just a quick visit as he was in the area - and we were off to pick up her wigs. One wig looks great; the other we left at the store. But, every girl needs two, so Heather ordered another one just like the one she likes :)
Today was Day 2. As I entered the area, I saw a woman who appeared lost or confused. She asked me if I was there to attend the cancer support group. I told her I was not; I was there waiting for my daugther to take her treatment. The woman said, "Will you give me a hug. I really need support right now." Without hesitation, I hugged her and she started crying. She is scared and alone. Her support group IS her support group! She was afraid that she had missed the meeting because no one was around. I went to find her help, and shortly a social worker took over. The woman still met with her group; she was just 30 minutes early :) The receptionist thanked me over and over for helping this woman. It made me so sad to know that some people really are alone in this world, no matter what. I then looked at Heather and reminded her that she will NEVER be alone!
As Heather swiped her card to enter the radiation area, a family was leaving. The elderly woman told me, "We share special moments in there." It is a "family waiting room" for those who have loved ones in radiation. I think I will miss getting to know her. This week is her husband's last week.
I know each day may or may not be different from the day before. At some point, Heather may look like the others who leave through the door. She may be sick; she may be pasty; she may not have all her hair; and she may be extremely tired. BUT - she may not! She may continue to come out smiling. She may continue to think it isn't that bad. She may continue to wonder if things will get worse. Wouldn't that be GREAT! Heather is a fighter; I can tell she is going to make it.
Anyway, Heather managed the first treatment just fine. She did not feel as claustrophobic as she thought she would in her mask, which keeps her head from moving. The mask was molded to fit her head last week. She had some X-Rays and minor adjustments - then her 10-minute radiation. While she was starting, she heard EJ from The Kat radio station in the background. Instead of music, EJ was talking about Heather and Leapforacure. That HAS to be a good sign! We talked with her neurosurgeon - just a quick visit as he was in the area - and we were off to pick up her wigs. One wig looks great; the other we left at the store. But, every girl needs two, so Heather ordered another one just like the one she likes :)
Today was Day 2. As I entered the area, I saw a woman who appeared lost or confused. She asked me if I was there to attend the cancer support group. I told her I was not; I was there waiting for my daugther to take her treatment. The woman said, "Will you give me a hug. I really need support right now." Without hesitation, I hugged her and she started crying. She is scared and alone. Her support group IS her support group! She was afraid that she had missed the meeting because no one was around. I went to find her help, and shortly a social worker took over. The woman still met with her group; she was just 30 minutes early :) The receptionist thanked me over and over for helping this woman. It made me so sad to know that some people really are alone in this world, no matter what. I then looked at Heather and reminded her that she will NEVER be alone!
As Heather swiped her card to enter the radiation area, a family was leaving. The elderly woman told me, "We share special moments in there." It is a "family waiting room" for those who have loved ones in radiation. I think I will miss getting to know her. This week is her husband's last week.
I know each day may or may not be different from the day before. At some point, Heather may look like the others who leave through the door. She may be sick; she may be pasty; she may not have all her hair; and she may be extremely tired. BUT - she may not! She may continue to come out smiling. She may continue to think it isn't that bad. She may continue to wonder if things will get worse. Wouldn't that be GREAT! Heather is a fighter; I can tell she is going to make it.
Wednesday, September 10, 2008
Time for THANK YOUs!
I just returned from my somewhat monthly dinner with a group of friends - very special friends. Somehow we started calling our group of nine the "Ya Ya's" - not real orignal, but it works for us. We have been meeting for about 10 years, I think. When I think of all the "thank yous" I owe people, my "Ya Ya's" are at the top. From food, to hospital visits, to support, to gift cards, to grading my papers - my "Ya Ya's" have been there. We started donating money each month for a worthy cause; everyone chipped in $10 and then one person used the money to help a person in need. I'm not certain when it started and I am not certain when we stopped, but tonight, they all chipped in their money to support Leapforacure. Our "Random Acts of Kindness" has hit home. One of us is a person in need. I can never express my gratitude to these wonderful friends who are always there. Thank you.
So, on my way home from dinner, I began to think about ALL the people who have been so kind and supportive. My work place - Millard North High School - has been fabulous! Starting last spring after diagnosis, my school has embraced Heather and my family with kindness and genuine concern. My English department colleagues will always have a special place in my heart for their understanding and patience with me. From my tears to my laughter to my asking for help, someone has always been there willing to lend a hand - or tissue. Last spring my school donated over $1,000 in gift cards to Heather and our family. Upon return this year, the Mustang Mart sold "Heather t-shirts" with profits going to Leap-for-a-Cure. And it isn't over yet! Another fundraiser is September 29 for the Powder Puff game. Thank you.
Tricia - my best friend from high school - your support and shared knowledge (Alan) has been incredibily imporant and special to me. Alan made me feel so much better when he gave me confidence in Heather's doctor, support for San Francisco, and encouragement to ask him any questions that we may have. Just knowing that I could call him and you at any time for help has been a blessing. I can hardly wait for our next reunion :)
Kathy and Ted - you know all that you have done for Heather and for us. Without your support, we would have another problem with which to deal. I can never thank you enough for loving Heather as you do. Thank you.
Jean (one of my "Ya-Ya's") - you have almost the same passion as I have with Leap-for-a-Cure. Sometimes you push me more than I push myself. I am tired. I am drained. But then you come along with enthusiasm and new ideas. You have been my rock! Thank you.
Bob and Robyn - you know the inspiration that you give to Heather, which in turn is good for all of us. Without Bob as a role model, Heather may not have the courage she needs to fight. She knows what she must do to win, and thanks to you, she knows it is possible. How can I ever thank you enough for that? And Robyn, when you fire off all your ideas, I love it! I feel your excitement and that makes me want to work harder at getting the word out. Thank you.
To Heather's Aunt Jill and Aunt Annie - thank you for showing Heather how much you love her. Aunt Annie's continued creative cards and ideas are always special. The Angel bear is a gift of love, and we all felt it - even though Robyn could not figure out how the "membership" worked :) And Aunt Jill, you offered us laughter at a time that I thought I could cry myself out of tears. Your family pulled through and provided what we needed: an escape from reality with Rock Band, Ping-Pong, and cards. Thank you.
Mike - We love you! What else can I say? You are the love of Heather's life and together the two of you will make a future. I am so proud of your support and understanding and love for Heather. You are there when she needs you and when we need you. Thank you.
Finally, Michele and Amy - you two have given me the support I need from two wonderful daughters! You have been there for Heather the entire time, and you also find time to support me when I need a little boost. Through tears and laughter, we have made it! Dad and I cannot be happier with our children, and you two have demonstrated how a family's love can be stronger than fear. Thank you.
And to all the other people that I have not mentioned by name - Heather's cousins, aunts and uncles, and her special friends - please know we know how much you care. And all the other people in our lives who have made a difference with phone calls, cards, emails, and prayers - THANK YOU!
So, on my way home from dinner, I began to think about ALL the people who have been so kind and supportive. My work place - Millard North High School - has been fabulous! Starting last spring after diagnosis, my school has embraced Heather and my family with kindness and genuine concern. My English department colleagues will always have a special place in my heart for their understanding and patience with me. From my tears to my laughter to my asking for help, someone has always been there willing to lend a hand - or tissue. Last spring my school donated over $1,000 in gift cards to Heather and our family. Upon return this year, the Mustang Mart sold "Heather t-shirts" with profits going to Leap-for-a-Cure. And it isn't over yet! Another fundraiser is September 29 for the Powder Puff game. Thank you.
Tricia - my best friend from high school - your support and shared knowledge (Alan) has been incredibily imporant and special to me. Alan made me feel so much better when he gave me confidence in Heather's doctor, support for San Francisco, and encouragement to ask him any questions that we may have. Just knowing that I could call him and you at any time for help has been a blessing. I can hardly wait for our next reunion :)
Kathy and Ted - you know all that you have done for Heather and for us. Without your support, we would have another problem with which to deal. I can never thank you enough for loving Heather as you do. Thank you.
Jean (one of my "Ya-Ya's") - you have almost the same passion as I have with Leap-for-a-Cure. Sometimes you push me more than I push myself. I am tired. I am drained. But then you come along with enthusiasm and new ideas. You have been my rock! Thank you.
Bob and Robyn - you know the inspiration that you give to Heather, which in turn is good for all of us. Without Bob as a role model, Heather may not have the courage she needs to fight. She knows what she must do to win, and thanks to you, she knows it is possible. How can I ever thank you enough for that? And Robyn, when you fire off all your ideas, I love it! I feel your excitement and that makes me want to work harder at getting the word out. Thank you.
To Heather's Aunt Jill and Aunt Annie - thank you for showing Heather how much you love her. Aunt Annie's continued creative cards and ideas are always special. The Angel bear is a gift of love, and we all felt it - even though Robyn could not figure out how the "membership" worked :) And Aunt Jill, you offered us laughter at a time that I thought I could cry myself out of tears. Your family pulled through and provided what we needed: an escape from reality with Rock Band, Ping-Pong, and cards. Thank you.
Mike - We love you! What else can I say? You are the love of Heather's life and together the two of you will make a future. I am so proud of your support and understanding and love for Heather. You are there when she needs you and when we need you. Thank you.
Finally, Michele and Amy - you two have given me the support I need from two wonderful daughters! You have been there for Heather the entire time, and you also find time to support me when I need a little boost. Through tears and laughter, we have made it! Dad and I cannot be happier with our children, and you two have demonstrated how a family's love can be stronger than fear. Thank you.
And to all the other people that I have not mentioned by name - Heather's cousins, aunts and uncles, and her special friends - please know we know how much you care. And all the other people in our lives who have made a difference with phone calls, cards, emails, and prayers - THANK YOU!
Friday, September 5, 2008
Wig Shopping
Heather is almost ready to begin her treatment. As I mentioned before, she will have an MRI and CT Scan Monday, September 8. That is the last appointment we have until her radiation / chemo treatment begins.
We met with Dr. Popa, the oncologist, yesterday. Heather has two naseua medications and two anti-acid medications that she will need to take along with her chemo and radiation treatments. She has to take them at specific times in conjunction with the chemo and radiation. I asked Dr. Popa if Heather would get sick, and the doctor said yes. She also said at the very least Heather will have thinning hair, but probably she would lose most of it. Heather has been very organized and has taken ownership to managing her insurance and her medication. Of course, she IS 29, so she SHOULD be able to do this. But when I look at her, she is MY LITTLE girl. I want to hold her in my arms and rock her as I used to. So watching her handle this situation makes me very proud of her for being so level-headed. And, she has not lost her sense of humor either. In fact, yesterday when she had to pay another $40 copay, she said to the receptionist, "Brain cancer is an expensive little disease." The response, "Yes, it is."
After her pneumonia shot and blood work, we were off to go wig shopping. Heather has been told by many people to go now before she starts to lose her hair. It isn't as dramatic that way. She tried on many different styles and colors and finally narrowed it to two. I couldn't say, "Pick one"; I bought both! They come in next week. Michele and I had to try on a few as well. Michele looked great in one; I looked like a freak show in the two I tried on!
I received an email last night from a man in Omaha who was diagnosed last February with Stage IV brain cancer. He lifted my heart as he is doing well with no signs of his tumor returning. He and Heather share the same surgeon, same radiation oncologist, and Estabrook Cancer Center. Their treatments seem to be alike - at least in name and procedures. Instead of a support group, he may be the person Heather can talk to. He is about 6 months ahead in the treatment plan. In addition, he is planning to become involved with Leap-for-a-Cure, so I am thrilled!
Until next update, remember that "All growth is a leap in the dark." We are certainly in the dark, but we are learning more each day about ourselves and about brain cancer. We will fight and win this war against Brain Cancer!
We met with Dr. Popa, the oncologist, yesterday. Heather has two naseua medications and two anti-acid medications that she will need to take along with her chemo and radiation treatments. She has to take them at specific times in conjunction with the chemo and radiation. I asked Dr. Popa if Heather would get sick, and the doctor said yes. She also said at the very least Heather will have thinning hair, but probably she would lose most of it. Heather has been very organized and has taken ownership to managing her insurance and her medication. Of course, she IS 29, so she SHOULD be able to do this. But when I look at her, she is MY LITTLE girl. I want to hold her in my arms and rock her as I used to. So watching her handle this situation makes me very proud of her for being so level-headed. And, she has not lost her sense of humor either. In fact, yesterday when she had to pay another $40 copay, she said to the receptionist, "Brain cancer is an expensive little disease." The response, "Yes, it is."
After her pneumonia shot and blood work, we were off to go wig shopping. Heather has been told by many people to go now before she starts to lose her hair. It isn't as dramatic that way. She tried on many different styles and colors and finally narrowed it to two. I couldn't say, "Pick one"; I bought both! They come in next week. Michele and I had to try on a few as well. Michele looked great in one; I looked like a freak show in the two I tried on!
I received an email last night from a man in Omaha who was diagnosed last February with Stage IV brain cancer. He lifted my heart as he is doing well with no signs of his tumor returning. He and Heather share the same surgeon, same radiation oncologist, and Estabrook Cancer Center. Their treatments seem to be alike - at least in name and procedures. Instead of a support group, he may be the person Heather can talk to. He is about 6 months ahead in the treatment plan. In addition, he is planning to become involved with Leap-for-a-Cure, so I am thrilled!
Until next update, remember that "All growth is a leap in the dark." We are certainly in the dark, but we are learning more each day about ourselves and about brain cancer. We will fight and win this war against Brain Cancer!
Wednesday, September 3, 2008
The Next Step
I thought this would be some of our funny family stories (mostly Heather's funnies), but today just doesn't seem appropriate for them. Maybe next time. We met with Heather's radiation oncologist today. Tomorrow is the regular oncologist. For the first time we heard "anaplastic," which is another word for malignant astrocytoma Stage III. I have spent the last three months learning everything I could about diffuse astrocytomas - Stage II, which means low grade. Today, it's "anaplastic" and "aggressive." I have much more to learn.
Before radiation treatment can begin, Heather will need a CT scan and another MRI with contrast. Then, a team of people will blend the two together to create the perfect plan for Heather. She will begin 3-Dimensional Conformal Radiotherapy (3D-CRT), which combines multiple radiation treatment fields to deliver precise doses of radiation to the brain. The idea is to tailor each of the radiation beams to the patient's tumor, allowing coverage of the brain tumor itself but keeping radiation away from nearby organs, such as the eyes. She will probably begin this treatment on Monday, September 15 if all goes well.
Along with radiation, Heather will be taking daily doses of Temodar (chemotherapy) for six weeks. After her six weeks, she will get a break for about three weeks before she begins a year of chemotherapy. We will be heading to San Francisco during her "break" to see Dr. Chang again.
Hopefully, tomorrow will bring us more information and maybe a sense of better news. No matter what news we receive, we will continue to be hopeful and grateful for all the support we have received. Heather is our #1 concern, and she gets the BEST!
Before radiation treatment can begin, Heather will need a CT scan and another MRI with contrast. Then, a team of people will blend the two together to create the perfect plan for Heather. She will begin 3-Dimensional Conformal Radiotherapy (3D-CRT), which combines multiple radiation treatment fields to deliver precise doses of radiation to the brain. The idea is to tailor each of the radiation beams to the patient's tumor, allowing coverage of the brain tumor itself but keeping radiation away from nearby organs, such as the eyes. She will probably begin this treatment on Monday, September 15 if all goes well.
Along with radiation, Heather will be taking daily doses of Temodar (chemotherapy) for six weeks. After her six weeks, she will get a break for about three weeks before she begins a year of chemotherapy. We will be heading to San Francisco during her "break" to see Dr. Chang again.
Hopefully, tomorrow will bring us more information and maybe a sense of better news. No matter what news we receive, we will continue to be hopeful and grateful for all the support we have received. Heather is our #1 concern, and she gets the BEST!
Friday, August 29, 2008
San Francisco trip
We wanted better news. We planned for better news. We never expected bad news. We went to UCSF Med Center with hopes of Heather becoming a part of a clinical trial - Phase 2 trial - for patients with Stage 2 Astrocytoma. Dr. Susan Chang is heading such a trial. However, after a new MRI and a subsequent meeting with Dr. Chang, we learned that Heather's pathology report shows some characteristics of Stage 3. That means that she cannot participate because Dr. Chang feels Heather would be "under treated" with just Temozolomide; Dr. Chang feels Heather needs radiation and chemo treatment. I must have asked her three different ways before I actually understood: No, Heather does NOT qualify!
So the news isn't good, but our hopes are still high. We LOVED Dr. Susan Chang! Heather has a long, bumpy 15 months ahead of her. She agreed to join a study about the genetic links to brain cancer. Since my father died of primary brain cancer at the age of 43, Heather's involvement in the study might be of some help in the future. If she has whatever the study needs, my girls and I will be next. Then, my sisters and their children.
After three days, we are back in Omaha and already met with Heather's oncologist. Next week we will meet with a radiation oncologist and her regular oncologist as well. I have a lot of questions regarding radiation to the brain! Omaha does not have neuro-oncologists, I guess. I have heard that from two doctors and another brain cancer family. I think that is odd.
I have called a brain tumor support group. I think it is time we join - Heather too. Knowledge is power; and the more we learn, the more we can be proactive. Most importantly, Heather needs to talk with others who are sharing her experiences. I know that depression is something to keep an eye on, so the sooner we get involved, the better.
Tonight I feel depressed myself. I am a helpless mother who cannot protect her child. My husband and I know what we should say to each other, but we don't. We both handle emotions differently. I have to be strong because Heather needs me to be. I have to be strong because my husband needs me to be. So, I will fight along side of Heather and wish that is I who is undergoing the treatment.
Next week we will learn more - too much more! We will learn all about brain radiation. We will learn what all the numbers mean. We will learn about blood counts, medications, etc. - knowledge that I wish I never had to know.
Next message will contain some of our "funnies."
So the news isn't good, but our hopes are still high. We LOVED Dr. Susan Chang! Heather has a long, bumpy 15 months ahead of her. She agreed to join a study about the genetic links to brain cancer. Since my father died of primary brain cancer at the age of 43, Heather's involvement in the study might be of some help in the future. If she has whatever the study needs, my girls and I will be next. Then, my sisters and their children.
After three days, we are back in Omaha and already met with Heather's oncologist. Next week we will meet with a radiation oncologist and her regular oncologist as well. I have a lot of questions regarding radiation to the brain! Omaha does not have neuro-oncologists, I guess. I have heard that from two doctors and another brain cancer family. I think that is odd.
I have called a brain tumor support group. I think it is time we join - Heather too. Knowledge is power; and the more we learn, the more we can be proactive. Most importantly, Heather needs to talk with others who are sharing her experiences. I know that depression is something to keep an eye on, so the sooner we get involved, the better.
Tonight I feel depressed myself. I am a helpless mother who cannot protect her child. My husband and I know what we should say to each other, but we don't. We both handle emotions differently. I have to be strong because Heather needs me to be. I have to be strong because my husband needs me to be. So, I will fight along side of Heather and wish that is I who is undergoing the treatment.
Next week we will learn more - too much more! We will learn all about brain radiation. We will learn what all the numbers mean. We will learn about blood counts, medications, etc. - knowledge that I wish I never had to know.
Next message will contain some of our "funnies."
Sunday, August 24, 2008
The Beginning
Headaches, headaches, headaches. That is why Heather went to the doctor. She had changed jobs and there was a lot more computer work and some reorganization going on, so we thought she needed to see her eye doctor. Once the eye doctor said her eyes would not cause the type of headaches Heather had, she decided she needed to see our family internists (Dr. Daryani or Dr. Denman). Heather's appointment was on April 16; our doctor sent her for an MRI that afternoon. (As a side note: We believe her quick decision may be what eventually saves Heather's life! Many doctors play around with "maybe it's migraines" or "maybe it's allergies" or "maybe. . . " But our doctor goes for the worst first, and then works backwards.)
Heather immediately knew something was wrong. The MRI tech started acting strange and would not allow Heather to leave. Finally, the tech told Heather, "I have to see what your doctor wants us to do before you can leave." That's when Heather called us. I don't know how fast we drove, but I know we reached her in record time! Once the tech told her she could leave, we went to Heather's house and tried to act as if the tech had made some horrible error.
The next day, Heather called me at work. The words I heard: "It's a tumor. Come home." Chills still run through my blood as I remember those words. Our doctor was so supportive! She called Heather, gave Heather her personal phone numbers, and told Heather to have me call her. I did. The news did not change.
Friday, April 18 we are sitting in a neurosurgeon's office (Dr. Long). We see the MRI and we see the tumor. We also see another tumor in her brain stem! We again hear the words "brain tumor" and now the word "cancer." We hear the word "surgery." It is a lot to take in.
The following week brought many more MRIs and the first of two surgeries. Thursday, April 24 was Heather's first. Our neurosurgeon felt fairly good about the results. The next morning's MRI supported his results, and he seemed upbeat.
Recuperation from this surgery is surprisingly quick. Heather was released on Sunday, April 27 to come back to our house. She obviously had to take life slowly and could not lift or bend over. Work was put on hold for 4 weeks and then only 1/2 days.
But on Tuesday, May 12, we again heard the words "surgery" and "cancer." We knew the pathology report had come back with "diffuse astrocytoma." We spent many hours researching and learning about that particular type of brain cancer. We knew Heather was "lucky" that diffuse astrocytomas are "only" Stage II, but we also learned that diffuse astrocytomas are slow growing but almost always develop into a more aggressive form. Dr. Long felt he needed to perform surgery again. He said that since she tolerated the first one so well with few problems, he could be more aggressive and retract more of the tumor. Her second surgery was scheduled for June 12.
June 12 was almost identical to April 24. The results were certainly more positive because more of the tumor had been retracted. Heather again tolerated the surgery well - maybe a little more problems with her left side, but still OK. After PT and time, she still favors her left side a little. Sometimes she seems to forget to use her left hand. But again, no big problems!
The the follow-up appointment left us a little unsettled. Basically, Heather was told that she will have MRIs every 3 months to see what happens. If the cancer starts to become more aggressive, it would be caught early and then more aggressive treatment would take place. Heather's cancer has intertwined with her good brain cells; therefore, removing the cancer is impossible. As for the inoperable tumor? There is nothing we can do but wait and see. She has her next MRI and neurosurgeon appointment on September 15. Although I respect our neurosurgeon and believe he is a "doctor's doctor," I have always felt a second opinion is always a good choice. We are lucky to have a friend who is a neurosurgeon on the west coast to help us with questions and answers. He even visited with Dr. Long and feels Heather is in good hands. But getting that second opinion just kept calling me!
I continued to research as I wanted to find out more. What's being done for brain tumors? What are the treatment options for diffuse astrocytomas? What is the life expectancy? So many questions. After hours and days and weeks of research, I found one of interest to me. I just felt good about it. Dr. Susan Chang from UCSF Medical Center. I contacted her and she wrote back. Heather sent information, and she wanted more. Finally, we sent everything - from all MRIs, operative reports, pathology slides, etc. We will be meeting with
Dr. Chang on Wednesday, August 27 to see what she thinks Heather's treatment options are. I know Dr. Chang is completing a Phase II trial using the drug temozolmide, which is a chemo drug that is used to stop the growth of cancer cells and even shrink tumors. Now we just need to see if this is something that can benefit Heather and the many others who have this devastating disease.
So, a short story for such a long time in our lives. After our trip to San Francisco, I will write an update. Keep praying for a LEAP for a CURE!
Heather immediately knew something was wrong. The MRI tech started acting strange and would not allow Heather to leave. Finally, the tech told Heather, "I have to see what your doctor wants us to do before you can leave." That's when Heather called us. I don't know how fast we drove, but I know we reached her in record time! Once the tech told her she could leave, we went to Heather's house and tried to act as if the tech had made some horrible error.
The next day, Heather called me at work. The words I heard: "It's a tumor. Come home." Chills still run through my blood as I remember those words. Our doctor was so supportive! She called Heather, gave Heather her personal phone numbers, and told Heather to have me call her. I did. The news did not change.
Friday, April 18 we are sitting in a neurosurgeon's office (Dr. Long). We see the MRI and we see the tumor. We also see another tumor in her brain stem! We again hear the words "brain tumor" and now the word "cancer." We hear the word "surgery." It is a lot to take in.
The following week brought many more MRIs and the first of two surgeries. Thursday, April 24 was Heather's first. Our neurosurgeon felt fairly good about the results. The next morning's MRI supported his results, and he seemed upbeat.
Recuperation from this surgery is surprisingly quick. Heather was released on Sunday, April 27 to come back to our house. She obviously had to take life slowly and could not lift or bend over. Work was put on hold for 4 weeks and then only 1/2 days.
But on Tuesday, May 12, we again heard the words "surgery" and "cancer." We knew the pathology report had come back with "diffuse astrocytoma." We spent many hours researching and learning about that particular type of brain cancer. We knew Heather was "lucky" that diffuse astrocytomas are "only" Stage II, but we also learned that diffuse astrocytomas are slow growing but almost always develop into a more aggressive form. Dr. Long felt he needed to perform surgery again. He said that since she tolerated the first one so well with few problems, he could be more aggressive and retract more of the tumor. Her second surgery was scheduled for June 12.
June 12 was almost identical to April 24. The results were certainly more positive because more of the tumor had been retracted. Heather again tolerated the surgery well - maybe a little more problems with her left side, but still OK. After PT and time, she still favors her left side a little. Sometimes she seems to forget to use her left hand. But again, no big problems!
The the follow-up appointment left us a little unsettled. Basically, Heather was told that she will have MRIs every 3 months to see what happens. If the cancer starts to become more aggressive, it would be caught early and then more aggressive treatment would take place. Heather's cancer has intertwined with her good brain cells; therefore, removing the cancer is impossible. As for the inoperable tumor? There is nothing we can do but wait and see. She has her next MRI and neurosurgeon appointment on September 15. Although I respect our neurosurgeon and believe he is a "doctor's doctor," I have always felt a second opinion is always a good choice. We are lucky to have a friend who is a neurosurgeon on the west coast to help us with questions and answers. He even visited with Dr. Long and feels Heather is in good hands. But getting that second opinion just kept calling me!
I continued to research as I wanted to find out more. What's being done for brain tumors? What are the treatment options for diffuse astrocytomas? What is the life expectancy? So many questions. After hours and days and weeks of research, I found one of interest to me. I just felt good about it. Dr. Susan Chang from UCSF Medical Center. I contacted her and she wrote back. Heather sent information, and she wanted more. Finally, we sent everything - from all MRIs, operative reports, pathology slides, etc. We will be meeting with
Dr. Chang on Wednesday, August 27 to see what she thinks Heather's treatment options are. I know Dr. Chang is completing a Phase II trial using the drug temozolmide, which is a chemo drug that is used to stop the growth of cancer cells and even shrink tumors. Now we just need to see if this is something that can benefit Heather and the many others who have this devastating disease.
So, a short story for such a long time in our lives. After our trip to San Francisco, I will write an update. Keep praying for a LEAP for a CURE!
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