Wednesday, March 18, 2009

Day-by-Day

Some times the days seem to slip by smoothly and I forget to update. When things go well, we keep busy and move forward - almost sidelining our situation. However, one little disruption, and everything comes to a halt - only to keep us on our toes.

Slowly, Heather has been weaning from her steroids. All has been going well, including her swollen face slimming a bit. She was down to 1 mg a day when she became light-headed and vision in her right eye was "weird" (her description, not mine). Dr. Popa increased her steroids to 2 mg, which doesn't seem like much. But tonight stomach discomfort began, much like what Heather experienced in January. Back then she had a CT scan to make certain she did not have a blood clot. She recovered with some medication, so we are hoping the discomfort once again goes away and she can continue her steroid weaning.

Heather continues her positive attitude, which is remarkable and a model for all. She keeps busy with work and her house and has even shown interest in making cards / crafts with me. It is difficult to believe that the one-year mark of Heather's diagnosis is just weeks away. What a year we have had, but we have survived and believe 2009 is the year for only GOOD NEWS!!

Saturday, February 28, 2009

Good News Wednesday

Our San Francisco trip left smiles on our faces and strawberry margaritas in our tummies! What looked like new tumor growth and active cancer cells was really residual swelling from the radiation. Heather's MRI displayed the swelling had all but disappeared, so no new tumor growth. The MRS is a good baseline for her next visit, which does not happen for two months - April 21 to be exact.

We had all been on pins-and-needles for the last month after being told what Heather's MRI suggested. I think we all prepared ourselves for bad news and had been thinking about what the next step forward would be. We did not talk about it as much as think about it. Because only positive thoughts enter into our lives, we could not allow our fears to take control. But when we all sat in Dr. Chang's office on Wednesday, our legs were shaking, our smiles at bit forced. Then Dr. Chang wheeled around in her chair with her smile, and I think we knew, but just had to hear the words: Your MRI looks good.

So what does this mean? It means Heather still has her tumor, but it does not appear to be growing. That may not sound like great news, but it is. Heather will always have this stupid tumor and it will someday start to grow again. The cancer cells will become active again; however, if she is on her Temador and it starts to grow, the Temador is designed to attack it. If the tumor grows while she is on Temador, the treatment will be changed. However, so far so good on Temador. And the radiation is designed to work for several months after the treatment ended. So, the swelling was most likely from the radiation (normal) and the radiation could still be killing off some of the tumor, creating dead cells.

She is finally being weaned from her steroids. Once again, we have found some humor in the face of something not in our control. Heather has lead the way to acceptance, and I guess humor is one way to deal with it. Her puffy face and extra weight gain from her high dosage will soon disappear - well maybe in about three months.
Of all the things that Heather has gone through, the puffy face - and maybe the moustache that came with it - has bothered her the most. Mike, her boyfriend of 2 - 1/2 years, has been by her side and has helped to let her know she is beautiful know matter what. Every time I look at her, I see beauty, but I am her mother.

Heather's blood work is fabulous. She has that checked every week. All her doctors - in fact all the medical team treating her - is so proud of her attitude and her inner strength. She has emerged as a role model for anyone who is facing a life-threatening disease. She continues to view this as a bump - OK, a mountain - in the road of life, but she is going to drive over it to see what lies ahead. We remain incredibly proud of her and thankful that she is our daughter.

Sunday, February 8, 2009

WOO-HOO

The UNO/LFAC event was very successful! We raised about $45,000 for Methodist Estabrook Cancer Center. I am so grateful for all the support from friends and businesses and the community. Without all the volunteer time and every single dollar donated, we could not have reached and exceeded Head Coach Mike Kemp's $30,000 goal.

Michele - without you, this event would not have been. We know your plate is full, but you still found time to make certain everything pulled together. We love you and thank you for always being you!

Amy - although you were unable to attend, your constant words of support helped us feel we were always doing well. You have always been very positive with our cause and have celebrated our successes. Thank you!

Mike and Heather - when you were able to be there, you kept the cause close to my heart. I know you wanted the event to be as successful as anyone. Thank you!

Robyn - your artistic and creative ability made our event look professional. And all the work you put into our posters, brochures, donation board, etc. is unmatched by anyone. Your boundless effort to make everything perfect has given Leap-for-a-Cure a boost. Thank you!

Bob - your positive attitude toward everything helps us to keep looking up. Even though you could only be at one game, you could not have chosen a better one. Having you share in the last night met so much to us and to Heather. You are her rock; that is a bond that can never be broken. Thank you!

Jean - your energy with people and connectedness with the community is unmatched. Whenever I am with you, I know smiles and laughter are not far. Your willingness to be "there" at all times is incredible. Thank you!

Jeff - you are our crazy mingling friend. You make everyone feel a part of the "party," so no one feels left out. In addition, you are more perceptive than most people might think; thank you for all your words of wisdom throughout.

Brandi and Jeff - you two were FABULOUS emcees. We could not have asked for any better than you two. Thank you!

Obviously, UNO hockey coaching staff and players - thank you for being so willing to support our cause.

And to all of our other friends and family who volunteered time to help our effort, THANK YOU!

Aaron and Elicia
Chad
Vic and Ruth
Deb and Bill
Deb and Dave
Dave and Kara and Matthew, Mark, and Sam
Dick and Cathy and Charissa and Carly
Kate and another Kate
Brian and Jenna

And to the other people - some of my students, friends of friends, friends who came from their seats to help count money, Heather's medical personnel, and volunteers I met through brain cancer connections - thank you!

Finally, to the businesses who helped throughout - from equipment donations to monetary donations - thank you!

Sometimes it is fun to write about something other than brain cancer.

Tuesday, February 3, 2009

Just a Quick Update

We are headed to San Francisco in February. The radiologist, Dr. Chang, and the tumor board feel that the "something" could be new tumor growth, or active cancer cells. Thank goodness we are on top of the situation so little time is being lost. Heather will start her chemo tomorrow night (2/3) for 5 days, then on Feb. 25 she will have an MRI/MRSpectroscopy, which will help determine what the "something" and "leakage" is. Even though the pathology report states "consistent with new tumor growth," the report could be wrong. We will all feel better once we visit with Dr. Chang.

Heather's steroids have certainly taken a liking to her. She gained 12.5 pounds in one week! When she told Dr. Popa that her knees and ankles ache, Heather was expecting to hear, "That's a side-effect from steroids." Instead, Heather heard, "That's because you have gained so much weight"! They both got a chuckle from that.

We will have more TV coverage soon. Channel 3 (KMTV) filmed a segment last night at our house as we were working on the UNO Hockey / Leap-for-a-Cure event. Robyn, Jean, Jon, Michele, Mike, Heather, and I were all busy as the photographer filmed. Nothing was staged. We were very busy folding brochures, updating our signs, writing for the program, writing the script, etc. Carol Wang was very professional and very nice. She fit in well and was very easy to talk to. She also interviewed Heather and me, so it will be interesting to see how the story is developed and aired. At this time, we don't know when it will be on TV. We have been very fortunate with media coverage: KETV (Channel 7), Omaha World Herald (2 stories), KPTM (Channel 42), and now KMTV (Channel 3)! Hopefully, Omaha is getting word: BRAIN CANCER needs support and funding. I don't want to go on the bandwagon, but FYI: funding has been cut for brain cancer.

Lastly, I want Michele to know how much we appreciate her efforts, time, and energy as she has really pulled the UNO event together. Without her involvement, we would not have been able to do it.

Let's all PRAY for good news in San Francisco and for a successful UNO Hockey / Leap-for-a-Cure final weekend!

Sunday, January 25, 2009

"I Don't Know"

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.

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!

Saturday, December 13, 2008

Downside of Chemo Treatment

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!