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."
Friday, August 29, 2008
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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