Another UCSF Medical Center trip with "status quo" results. I've come to realize that starting about the week before our SF trip, I start feeling anxious and weepy. I've always heard that people's lives flash before their eyes in life-threatening situations. My life with my children is relived with details nightly, especially the week prior to our trip. I just never want that life to be taken from us.
Heather's two-hour stint in the MRI machine about drove her crazy. Her regular MRIs take about 45 minutes, but adding an MRS adds about another 45 minutes. This trip the machine broke, and Heather had to add another 30 minutes. As most people know, patients must lie perfectly still in an MRI machine. Yuck! She wanted to move, scratch, twitch - but she couldn't if she wanted to get out.
Off to Dr. Chang's office to anxiously await the news of the MRI. Although Dr. Chang did not greet us with a smile as she has done in the past, she did tell us that the MRI suggests no real change. She thinks Heather is sensitive to radiation; therefore, the slight change in the MRI is probably due to radiation effects. The MRS results take a few days.
Upon our return home, Dr. Chang called to tell us that the radiologist also sees some slight changes, but both are believing it is from the radiation for now. So, there will be no changes in medication yet. Dr. Chang will see Heather again on June 5. Every time we hear the word "change," I am worried / concerned. CHANGE is not a good word for us, so until Dr. Chang is 100% confident that this slight change is from radiation, I will continue to stress a little.
But we also had some GREAT hope cross our path. As we were leaving Dr. Chang's office, we wound up in the elevator with a man and his wife. The wife said to Heather, "brain tumor?" Heather nodded, I said brain cancer, and the husband removed his hat to show us his surgical scars. But, his surgery was almost 15 years ago! Diagnosed with GBM, he was given 18 months to live - but 14 years and 7 months later, he is fine and still working as a software engineer. This family has added more hope to our situation. They too have faced this diagnosis with optimism and humor - much like we have. I believe we were destined to meet this wonderful couple. My sister Jill and I quickly gave them each a Leap-for-a-Cure wristband and a heaping helping of THANK YOU and STAY STRONG. Michael logged on to our website and left a quick message on this blog. I am so happy to have met some new hope and people on our journey.
As I end this entry, I keep thinking of all the wonderful people I have met through LFAC. Some day I will have to sit down and figure it all out, but it seems overwhelming to me right now. I struggle with always being tired - maybe a sympathy feeling for Heather? She is always tired because of her medications.
I am confident that the MRS will be fine, so hope that there will not be a new entry soon. We always send our blessings to all who are currently battling this disease and to all who have lost loved ones because of it. Research is so close; I believe better treatments and a cure are on the horizon.
Friday, April 24, 2009
Saturday, April 11, 2009
Happy Easter / Passover
Today is Easter. Even though my children are all adults, I still do the Easter baskets. I just finished; it is after midnight; and I am reflecting on many things right now. It is a good time to write.
Heather did not feel well this round of chemo. She was sick with a respiratory infection during her chemo week, so she had to wait a few days. She received her fluids three times instead of the usual two, but she still was nauseous and very tired. I was able to go with her to see Dr. Popa on Friday, and Heather's white cell count is down. We are hoping it is from the chemo and respiratory issues. She seems to feel OK now, so we are crossing our fingers that she beats this and her cell count goes up by next Friday.
She and I are headed to San Francisco again on Sunday, April 19 for the Tuesday, April 21 appointment. Since we always have to include two travel days along with her UCSF appointments, we are always gone for at least three days. So, we are leaving on Sunday so that we can have another "Fun-day Monday" as we had three months ago. Last time was Santa Cruz for the day; so it will be difficult to beat.
Heather's hair is growing back. If you remember, she lost her hair from the radiation, not the chemo. She still has a bald spot on the very top of her head, but the fuzz is there. I asked her today if she wanted to shave her head one more time, but she said no. I think she is planning on the top to fill in sooner than later. I suggested spray paint.
She is currently off of all steroids - 5 days to be exact. Now we are closely monitoring any changes in her coordination, her eye sight, etc. The symptoms that lead to the steroids proved to be from brain swelling, but we are choosing to believe that issue has been handled and is over.
I think we will feel better - as always - once we hear the words "status quo" in San Francisco. I have quit hoping for the word "shrinking" because I have accepted that it won't happen. But, "no new growth" is good news for us. There are some new treatments on the horizon, and we plan for Heather to benefit from them.
As this season of renewal begins, I pray for new hope and new beginnings not only for my daughter, but also for all who suffer from illness, fear, and despair. I pray for belief in what may seem impossible, for we all know that miracles do happen.
God Bless,
Sue
Heather did not feel well this round of chemo. She was sick with a respiratory infection during her chemo week, so she had to wait a few days. She received her fluids three times instead of the usual two, but she still was nauseous and very tired. I was able to go with her to see Dr. Popa on Friday, and Heather's white cell count is down. We are hoping it is from the chemo and respiratory issues. She seems to feel OK now, so we are crossing our fingers that she beats this and her cell count goes up by next Friday.
She and I are headed to San Francisco again on Sunday, April 19 for the Tuesday, April 21 appointment. Since we always have to include two travel days along with her UCSF appointments, we are always gone for at least three days. So, we are leaving on Sunday so that we can have another "Fun-day Monday" as we had three months ago. Last time was Santa Cruz for the day; so it will be difficult to beat.
Heather's hair is growing back. If you remember, she lost her hair from the radiation, not the chemo. She still has a bald spot on the very top of her head, but the fuzz is there. I asked her today if she wanted to shave her head one more time, but she said no. I think she is planning on the top to fill in sooner than later. I suggested spray paint.
She is currently off of all steroids - 5 days to be exact. Now we are closely monitoring any changes in her coordination, her eye sight, etc. The symptoms that lead to the steroids proved to be from brain swelling, but we are choosing to believe that issue has been handled and is over.
I think we will feel better - as always - once we hear the words "status quo" in San Francisco. I have quit hoping for the word "shrinking" because I have accepted that it won't happen. But, "no new growth" is good news for us. There are some new treatments on the horizon, and we plan for Heather to benefit from them.
As this season of renewal begins, I pray for new hope and new beginnings not only for my daughter, but also for all who suffer from illness, fear, and despair. I pray for belief in what may seem impossible, for we all know that miracles do happen.
God Bless,
Sue
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