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.
Saturday, September 27, 2008
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!
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