33 rounds; 33 trips; 33 visits. It's over! For as happy as Heather and all of us are to have radiation completed, the last day left us a little sad. Saying good-bye to the technicians, saying good-bye to the other patients - it's just a little sad. You visit with people everyday and become very interested in their lives, their journey, their personal battle. We wish everyone the best of luck in their fight. But we will never really know how they do.
Heather is doing well. She had her first full day of work in over 6 weeks today, so she is tired. She is so grateful to her employers for being understanding and supportive. Because of their support, Heather did not suffer extra stress about her job. Currently, her head is tender, much like a sunburn, so she does not like to wear anything on her head. Getting ready in 10 minutes is a plus as well. And, she has a great shaped head, so she looks pretty good bald. However, she might get cold this winter :)
I said in my last entry that I would talk about some of our fundraising events. First, after our "Wear Gray for a Day" event in September, Reagan Elementary School had a Penny War among some of its classes. Students also sold gray wristbands . Both ideas raised about $1,200! Because of Reagan Elementary, my department decided to have a Penny War among our English classes during homecoming week. Our students raised $8,200! Then our DECA students raised another $1,000 during the Powder Puff game. Student Council and a "Miracle Minute" added some more. All together, Millard North High School raised $10,500 for Leap-for-a-Cure!
Monster Bash was so fun! We think about 200 people attended and I met so many new people -some who have a connection to brain cancer and some who just want to support our cause. We are already thinking about next year's bash :) We have some ideas to make the event better as well as what we want to keep the same. I know - I just need to relax a little. I only have 12 months! Thunder Alley hosted the event and I cannot thank Ted and Kathy enough for all their efforts to make it a success. In addition, the classic rock band "Charlie in the Box" played for the event and donated the time. Everyone helped to make this a special awareness event.
Today is Old Chicago Restaurants' "Cookies for a Cure" day. Old Chicago has been a wonderful support for our cause. First, three of the restaurants each donated 8 pizzas to reward the winning teacher's classes for the Penny War at Millard North. Then the restaurants planned for the "Cookies for a Cure" fundraiser. I'm proud to be involved with this fine organization! Plus, I bought a lot of delicious cookies :)
The next event is November 15 at Mid-America Center. The Lancer Hockey team has purchased special brain cancer jerseys. After the game, the jerseys will be auctioned and all proceeds will go to Leap-for-a-Cure. Another fun evening is approaching. . .
We have been so fortunate to have so many people supporting Leap-for-a-Cure. From students and staff at Reagan Elementary and Millard North High School, to Thunder Alley, to Old Chicago, to Lancer Hockey - we are so lucky to be surrounded by so many wonderful people.
I will continue to fight for the cause no matter how long it takes to find a cure. It has been too long without new steps, and I am getting impatient. I met so many good people the other night, and each one deserves to live his / her life to the fullest. Each one has a story. Each one has a fight. Our story and our fight is no different. However, this story has hit home - my home. We are no longer someone else.
Thursday, October 30, 2008
Saturday, October 25, 2008
Pre-Monster Bash
Tuesday, October 28, is a day we are all looking forward to. We have worked to promote the evening and we have a good feeling about its success. Heather is getting so excited, so that also makes me happy. She and I spent the afternoon buying balloons, table clothes, raffle tickets, etc. for the event. We are so ready . . .
Last week Heather was told she has Monday, Tuesday, and Wednesday radiation treatments left. We had planned that Friday would be her last day, but she is doing "boost" right now, and that requires her to have three more days of it. We will celebrate her first radiation free day at Old Chicago and buying cookies for a cure! (Thursday, October 30)
So far, she has tolerated everything so well. She is no longer sick; she went back on her steroids and that took care of the headaches and body aches. However,Dr. Popa told her to try to get off of them if she can as the steroids will affect her stomach. She is trying.
Sometimes I look at her and forget she is sick because she is doing so well. Her coloring is good; her health is good; her blood work is good; and her attitude is good. She IS going to beat this.
When she is finished next Wednesday, she is free of all medical appointments until her Wednesday, November 12 MRI in San Francisco. As I have said before, I can hardly wait to get good news. Then, we will be off to Hawaii for a week and then she starts the year-long chemotherapy (Temador) at much higher doses than she takes now. But, we are still hopeful she will tolerate it all well. We are ready to handle anything that happens - good or bad - and move forward. As Heather always says, "It's temporary."
Heather has been such an inspiration to me. Her attitude and decision to take charge of her situation has been a lesson for me. I learn from her every day. I try so hard NOT to dwell on unpleasantness, negative situations, and difficult experiences. Life is not perfect, and we can only deal with what is given to us. I have always told my children that it isn't WHAT happens; it is HOW we react to WHAT happens that makes us who we are. If that is as true as I believe, Heather is going to be a role model for so many people. She has handed this situation with such grace and dignity. I know I have said it before, but I cannot ignore this truth.
Next time I will devote time to Leap-for-a-Cure and the successes of our efforts. That is something else for which I am proud.
Last week Heather was told she has Monday, Tuesday, and Wednesday radiation treatments left. We had planned that Friday would be her last day, but she is doing "boost" right now, and that requires her to have three more days of it. We will celebrate her first radiation free day at Old Chicago and buying cookies for a cure! (Thursday, October 30)
So far, she has tolerated everything so well. She is no longer sick; she went back on her steroids and that took care of the headaches and body aches. However,Dr. Popa told her to try to get off of them if she can as the steroids will affect her stomach. She is trying.
Sometimes I look at her and forget she is sick because she is doing so well. Her coloring is good; her health is good; her blood work is good; and her attitude is good. She IS going to beat this.
When she is finished next Wednesday, she is free of all medical appointments until her Wednesday, November 12 MRI in San Francisco. As I have said before, I can hardly wait to get good news. Then, we will be off to Hawaii for a week and then she starts the year-long chemotherapy (Temador) at much higher doses than she takes now. But, we are still hopeful she will tolerate it all well. We are ready to handle anything that happens - good or bad - and move forward. As Heather always says, "It's temporary."
Heather has been such an inspiration to me. Her attitude and decision to take charge of her situation has been a lesson for me. I learn from her every day. I try so hard NOT to dwell on unpleasantness, negative situations, and difficult experiences. Life is not perfect, and we can only deal with what is given to us. I have always told my children that it isn't WHAT happens; it is HOW we react to WHAT happens that makes us who we are. If that is as true as I believe, Heather is going to be a role model for so many people. She has handed this situation with such grace and dignity. I know I have said it before, but I cannot ignore this truth.
Next time I will devote time to Leap-for-a-Cure and the successes of our efforts. That is something else for which I am proud.
Tuesday, October 14, 2008
Ready, Set, SHAVE
It's gone - all gone. Heather's patience with her hair, rather the lack of, drove her to have me shave her head. If I thought Jon would be reading this, I would never tell this story. We shaved her head with Jon's electric razor. We don't have clippers, and Heather did not want to wait another minute. It's a good thing that Heather covers her head with hats and scarves when in public. How can a shaved head have divots?
She is almost finished with her 5th week of radiation and chemo. She remains in good spirits, good health, and relatively good moods. She has been told that her 5th and 6th weeks of radiation will probably be her worst for being tired; however, so far so good. She may be dragging a little, but not enough to interfere with work or life in general.
I may have spoke a little too early. I started the entry Tuesday night while at parent / teacher conferences. When I came home, Heather was not feeling well. She said her chest felt heavy, her head hurt a little, she had begun to bruise, and she went to bed. Wednesday she began to feel worse and left work early to come home and nap. By Wednesday night, she was weepy with discomfort. Thursday, the doctor's office scheduled an immediate CT-scan - possible blood clot. Good news - no blood clot. Blood tests will hopefully give us a clue. Tonight, she feels better.
Next week is Heather's last week of chemotherapy and radiation. Yeah! We head to San Francisco November 12 for a follow-up to her six-week treatment. I am so looking forward to hearing that the tumor has shrunk!
When Heather was lying in bed feeling ill, I saw her little hairless head peeping from the covers. I held her, rubbed her head, and told her how much I love her. As I watched my little girl
become scared for the first time throughout this horrible ordeal, my tears welled and my composure melted. We have been so lucky so far. She has tolerated everything so well; I am completely selfish now. I never want her to suffer!
I know when she begins her new chemotherapy regime beginning of December, it will be an all new "game." The Temodar will be doubled from what she takes now. I know it will be a miracle if she does not get sick or have bad days. In fact, I am expecting it. I just don't want to think about it.
She is almost finished with her 5th week of radiation and chemo. She remains in good spirits, good health, and relatively good moods. She has been told that her 5th and 6th weeks of radiation will probably be her worst for being tired; however, so far so good. She may be dragging a little, but not enough to interfere with work or life in general.
I may have spoke a little too early. I started the entry Tuesday night while at parent / teacher conferences. When I came home, Heather was not feeling well. She said her chest felt heavy, her head hurt a little, she had begun to bruise, and she went to bed. Wednesday she began to feel worse and left work early to come home and nap. By Wednesday night, she was weepy with discomfort. Thursday, the doctor's office scheduled an immediate CT-scan - possible blood clot. Good news - no blood clot. Blood tests will hopefully give us a clue. Tonight, she feels better.
Next week is Heather's last week of chemotherapy and radiation. Yeah! We head to San Francisco November 12 for a follow-up to her six-week treatment. I am so looking forward to hearing that the tumor has shrunk!
When Heather was lying in bed feeling ill, I saw her little hairless head peeping from the covers. I held her, rubbed her head, and told her how much I love her. As I watched my little girl
become scared for the first time throughout this horrible ordeal, my tears welled and my composure melted. We have been so lucky so far. She has tolerated everything so well; I am completely selfish now. I never want her to suffer!
I know when she begins her new chemotherapy regime beginning of December, it will be an all new "game." The Temodar will be doubled from what she takes now. I know it will be a miracle if she does not get sick or have bad days. In fact, I am expecting it. I just don't want to think about it.
Saturday, October 4, 2008
Mid-Treatment
This week - the middle of the road for radiation - has brought another journey to our lives: Heather losing her hair. I have always read that people just wake up one day and their hair starts falling out in clumps. Well, that's true. Heather's hair started to fall out in the shower one morning, and it hasn't stopped since. As with all her other experiences in this journey, she has handled it with grace and optimism. Her take on what she goes through is that it is temporary. She feels our world is too superficial and plastic anyway, and hair only adds to that. Besides, she hopes her hair grows back thicker :)
Seriously, she did have a some tears and fear when the clumps landed on the shower floor, but her dad was there to add some comfort. She called me and said, "I want it all cut off!" We went to radiation that day and visited with another patient who has already lost her hair. She shared with us that if it all doesn't fall out, there will be strands left in spots. That grossed out Heather, and she was even more adamant to get hers cut. So, on Thursday, October 2, Heather sat in Penny's chair and said, "Cut it." Again she amazed me. Penny offered a private room, but Heather wondered why. With a cute twist, she reminded us that she has nothing to hide. The cut is short, but stylish and cute. Everyday she loses more hair and is now wearing head scarves in public. Jon always uses his thinning (bald) spot on the top of his head as evidence that his daughters have stressed him too much; now Heather uses her bald spot as proof that her father has given her too much stress! She named her spot DAD.
Sometimes Heather will lie on the couch resting her head on my lap as I hold her and rub her sore head. She isn't much for melodramatics, but she still needs her mom sometimes. I tell her that I remember her as a beautiful bald baby and she is now a beautiful semi-bald woman and I couldn't love her any more than I do. There really is something about a parent's love that cannot be defined.
We met with the radiation oncologist on Friday, and he and his nurse think Heather is doing very well. She has begun taking steroids to relieve some swelling due to the radiation but may taper a bit as early as next week. I don't like her on the medication, so I can hardly wait until she can get off. The swelling decision was made because of some uncharacteristic coordination problems - falling and tripping in the last week. Michele tried to convince the radiation oncologist that Heather has always been clumsy; Heather and I think Michele is goofy. I'm certain he thinks we are all nuts.
And, we are still fortunate to have time for play. So, off to Thunder Alley on Saturday night to watch NU football with friends. By halftime the NU game was a dud and we had eaten all our stomachs could hold, so Heather thought ending the night with our traditional fierce laser-tag competition - girls against the boys - would be appropriate. And, the girls finally won! No matter how many times we play, we always laugh ourselves silly! And laughter is wonderful medicine.
Seriously, she did have a some tears and fear when the clumps landed on the shower floor, but her dad was there to add some comfort. She called me and said, "I want it all cut off!" We went to radiation that day and visited with another patient who has already lost her hair. She shared with us that if it all doesn't fall out, there will be strands left in spots. That grossed out Heather, and she was even more adamant to get hers cut. So, on Thursday, October 2, Heather sat in Penny's chair and said, "Cut it." Again she amazed me. Penny offered a private room, but Heather wondered why. With a cute twist, she reminded us that she has nothing to hide. The cut is short, but stylish and cute. Everyday she loses more hair and is now wearing head scarves in public. Jon always uses his thinning (bald) spot on the top of his head as evidence that his daughters have stressed him too much; now Heather uses her bald spot as proof that her father has given her too much stress! She named her spot DAD.
Sometimes Heather will lie on the couch resting her head on my lap as I hold her and rub her sore head. She isn't much for melodramatics, but she still needs her mom sometimes. I tell her that I remember her as a beautiful bald baby and she is now a beautiful semi-bald woman and I couldn't love her any more than I do. There really is something about a parent's love that cannot be defined.
We met with the radiation oncologist on Friday, and he and his nurse think Heather is doing very well. She has begun taking steroids to relieve some swelling due to the radiation but may taper a bit as early as next week. I don't like her on the medication, so I can hardly wait until she can get off. The swelling decision was made because of some uncharacteristic coordination problems - falling and tripping in the last week. Michele tried to convince the radiation oncologist that Heather has always been clumsy; Heather and I think Michele is goofy. I'm certain he thinks we are all nuts.
And, we are still fortunate to have time for play. So, off to Thunder Alley on Saturday night to watch NU football with friends. By halftime the NU game was a dud and we had eaten all our stomachs could hold, so Heather thought ending the night with our traditional fierce laser-tag competition - girls against the boys - would be appropriate. And, the girls finally won! No matter how many times we play, we always laugh ourselves silly! And laughter is wonderful medicine.
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