So often I hear myself saying, "I don't know." I try very hard to be informed and to look up everything I may not know or understand about Heather's situation. However, even after asking questions and researching everything that I know to ask and research, I still say, "I don't know" too often for my liking.
We went to San Francisco for Heather's January 20 appointment. Because we did not think about bringing her January 5 MRI disc with us, Dr. Chang could not give us much information. Heather's brain was quite swollen then (January 5) and she went on her steroids, which did reduce the swelling a ton. But Dr. Chang could not see the comparison without the disc. She told us there was obviously "something there" that was not on the November MRI taken in San Francisco. But, knowing that Heather's brain swelling symptoms had diminished and her strength had returned to her left side, Dr. Chang felt comfortable that the steroids were working. But, the "something" was still there. So, upon our return to Omaha on Wednesday, we immediately "one-day" delivered the disc to UCSF Medical Center in hopes Dr. Chang would be able to present it to her Thursday morning tumor board meeting. Of course, our $60 "one-day" FedEx delivery wound up being a two-day delivery, so we have to wait until next Thursday.
Basically, Dr. Chang called and told us that she wants to see Heather the week of February 23 if the tumor board agrees the steroids are working and the "something" on the MR is from swelling. If the tumor board feels it might be something other than swelling, Dr. Chang will want to start another type of treatment before Heather's scheduled Temador treatment in two weeks. Heather also has some "leakage"; when I asked if that was normal and just part of the radiation, Dr. Chang said leakage is "nonspecific." I have tried to research this, but so far have not had much success. However, Dr. Chang reaffirmed that the swelling is from the radiation.
Because I see Heather almost daily and talk with her several times a day, I believe all is good. I refuse to think we have anything to worry about at this time; however, Heather is feeling a bit stressed right now. I think she believes if all was well, she would not have to return to San Francisco until the end of March. Because Dr. Chang wants to see her within a month, Heather is a little uncomfortable about it.
Heather's hair is beginning to grow in places, and only the top of her head remains hair-follicle free. I think she is excited about her hair starting to show some growth. She will, however, continue to shave her head as long as the top of her head is bald.
One somewhat funny situation: When Heather started her steroids, she started eating non-stop. We all knew the steroids would do that, but she was really eating a lot! She also had tons of energy, and needed little sleep, which is NOT normal for Heather. Well, come to find out, she was accidentally taking double dosage for 10 days! I think even though Heather was not happy with herself for making such a mistake, she was happy to know that she won't be uncontrollably eating as much.
As always, we continue our prayers and efforts in our fight against brain cancer! Please join the fight.
Sunday, January 25, 2009
Monday, January 12, 2009
Whew!
Heather has just finished her second month of Temador. YEAH for her not being sick! She has been tired and sleeping, but I don't think she has slept as much as last month. However, this time she had fluid - along with anti-nausea, electrolytes, anti-stress, and white blood cell "stuff"-infusions Day 1 and Day 3. Originally, she was supposed to begin on Monday, but Dr. Popa felt Heather needed another MRI because of some concerns with Heather's left side. The MRI revealed some edema around the brain. In addition, Dr. Popa wanted Dr. Long to view the MRI and compare it to the previous one from San Francisco. Because of her left side "issues," Heather is doing physical therapy and occupational therapy every week. Dr. Long feels what may look like tumor growth is really dead cells from the radiation - necrosis, I think. We will learn more when we return to San Francisco on January 20.
Although Heather has handled this round much better, she was too tired to attend the UNO Maverick Hockey / Leap-for-a-Cure event this weekend; but hopefully she will be able to attend in two weeks for the second of three weekends. Speaking of the weekend, LFAC has teamed with UNO hockey to promote brain cancer awareness. I am so excited about this event. Mike Kemp, head coach, has set a $30,000 goal. If the goal is met, all players and coaches will shave their heads Center Ice after the February 7 game. Although it sounds like a lot - and it is - Omaha seems to support good causes, and this is a good cause. This fundraiser is a wonderful opportunity for Brain Cancer Awareness and for UNO Maverick Hockey to get involved. The players are now going to visit Methodist Estabrook Cancer Center on Monday, January 19. Community work is vital for connectedness.
I just received notice today that the National Cancer Institute has made a preliminary decision to slash funding by 50% for the Adult Brain Tumor Consortium. That means research will lose funding, Trials will be cut, and brain cancer patients will suffer. Brain cancer patients and family rely on the hope of research; without research, treatment cannot advance. I think it is time for a check and balance on all funding - for everything! I don't care about "bridges to nowhere," nor do I care about flies mating. I just want a cure for cancer - ALL cancers!
As I mentioned earlier, I am so excited about UNO Maverick Hockey, Methodist Estabrook Cancer Center, and Leap-for-a-Cure's teaming together in the effort to fight brain cancer. Planning has been in the works for months, and now it is here. The first of three weekends is over, but I think the event will only get better. Some special people who have supported and organized and helped make it work: Mike Kemp, Michele Roberts, Shirley Fey, Robyn Sitzman, Jean Koerten, and Ryanne Hastings. Of course, others have helped, but these people have made the commitment as a committee to work extra hard and to share their talents. THANK YOU!
It seems as if I am always eager to go to San Francisco as there is always something new to learn. As always, I will have my list of questions and will keep my fingers crossed for GOOD news. Since 2008 is over, I am believing in 2009!
Although Heather has handled this round much better, she was too tired to attend the UNO Maverick Hockey / Leap-for-a-Cure event this weekend; but hopefully she will be able to attend in two weeks for the second of three weekends. Speaking of the weekend, LFAC has teamed with UNO hockey to promote brain cancer awareness. I am so excited about this event. Mike Kemp, head coach, has set a $30,000 goal. If the goal is met, all players and coaches will shave their heads Center Ice after the February 7 game. Although it sounds like a lot - and it is - Omaha seems to support good causes, and this is a good cause. This fundraiser is a wonderful opportunity for Brain Cancer Awareness and for UNO Maverick Hockey to get involved. The players are now going to visit Methodist Estabrook Cancer Center on Monday, January 19. Community work is vital for connectedness.
I just received notice today that the National Cancer Institute has made a preliminary decision to slash funding by 50% for the Adult Brain Tumor Consortium. That means research will lose funding, Trials will be cut, and brain cancer patients will suffer. Brain cancer patients and family rely on the hope of research; without research, treatment cannot advance. I think it is time for a check and balance on all funding - for everything! I don't care about "bridges to nowhere," nor do I care about flies mating. I just want a cure for cancer - ALL cancers!
As I mentioned earlier, I am so excited about UNO Maverick Hockey, Methodist Estabrook Cancer Center, and Leap-for-a-Cure's teaming together in the effort to fight brain cancer. Planning has been in the works for months, and now it is here. The first of three weekends is over, but I think the event will only get better. Some special people who have supported and organized and helped make it work: Mike Kemp, Michele Roberts, Shirley Fey, Robyn Sitzman, Jean Koerten, and Ryanne Hastings. Of course, others have helped, but these people have made the commitment as a committee to work extra hard and to share their talents. THANK YOU!
It seems as if I am always eager to go to San Francisco as there is always something new to learn. As always, I will have my list of questions and will keep my fingers crossed for GOOD news. Since 2008 is over, I am believing in 2009!
Subscribe to:
Posts (Atom)
