We never really realize what we take for granted until we see it taken away from someone else and see how hard it really would be. Watching them go through that and only being able to be minimal help is hard. Trying to put yourself in their shoes makes you wonder how they can be so strong to stay positive through everything being thrown at them.
Ever since the surgery, whenever I go to visit my mom I worry about the conversation. Not really the part where she asks the same questions multiple times because she doesn't remember or having to explain something again. It's more so the part where she gets emotional and asks about the surgery she had. She doesn't remember when, why or what happened. She just knows that it did happen. There are many times where she asks me to explain the whole thing for her and I understand why she wants to know. I would want to know, also. But having to re-tell the story every time I go to visit her gets really hard on me. It's an emotional thing. I've been thinking about making a ShutterFly book for her. We made one for the Chordoma Conference trip and Sandy made one for her after that. I'm not sure at the moment what that one was. I'm pretty sure it had to do with the surgery but it doesn't explain in it what happened. I'm thinking of writing it up and putting it together with some pictures of family so she can re-read it whenever she wants to know what happened.
Monday, October 22, 2012
Saturday, October 6, 2012
Tattoos
You know what really bothers me about people now days? They don't believe half of what you say. They believe what they want and that's it. I know everyone has different thoughts, ideas, feelings, etc. But you can't tell me what I should think or feel. Just like when it comes to tattoos. No one can tell me what I think about them. And, honestly, most the time I don't care what you think about them. "Tattoos don't have meaning like they used to." You don't know that. There is no way for you to know what a tattoo means to a person. Yeah, there are tattoos out there that don't have a real serious meaning, but to the person there is still a meaning. If they got it tattooed on them, then it does mean something to that. Simple as that. Just like my tattoos. For example, my bird:
Done by Jake Haag at A Brand New Tattoo in Eau Claire
What it looks like is all people can see about it. They don't know the meaning behind it unless they ask me or I tell them. Otherwise someone might see and think, "Her tattoo doesn't even mean anything. It's just a bird." No. It's not just a bird. Not to me. Same with the flowers. Why this tattoo means so much to me: This tattoo is a Goldfinch with Blue Cosmo flowers. My grandpa (who passed away in 2010) was always watching the birds outside through his picture window. It was something we did together every time I was there. His favorite birds were Goldfinched and Cardinals. I wanted to get something in memory of him and nothing reminds me of him more than the birds. The cosmos? Not typically colored blue, but I wanted a personal touch to theme. Blue is the color of the Chordoma Foundation so I incorporated that color into this tattoo so it means even more to me. It is my grandpa and mom tattoo. It means the world to me. I wouldn't change it for anything. People may see it as just a pretty bird, but to me it's more. And the only person who gets a real say in if my tattoo has meaning or not is me. In January just before my mom went in for surgery, I got another tattoo. When my dad and sister visited her a couple days before the surgery, I had my sister get my mom to write the word 'Persevere' on a piece of paper. When they got back, I took that paper to A Brand New Tattoo and got my fourth tattoo.
Done by Tim Morris at A Brand New Tattoo in Eau Claire
So don't tell me that tattoos don't have meaning anymore. You don't know everyone's personal stories. Until you do, keep your speech to yourself.
What it looks like is all people can see about it. They don't know the meaning behind it unless they ask me or I tell them. Otherwise someone might see and think, "Her tattoo doesn't even mean anything. It's just a bird." No. It's not just a bird. Not to me. Same with the flowers. Why this tattoo means so much to me: This tattoo is a Goldfinch with Blue Cosmo flowers. My grandpa (who passed away in 2010) was always watching the birds outside through his picture window. It was something we did together every time I was there. His favorite birds were Goldfinched and Cardinals. I wanted to get something in memory of him and nothing reminds me of him more than the birds. The cosmos? Not typically colored blue, but I wanted a personal touch to theme. Blue is the color of the Chordoma Foundation so I incorporated that color into this tattoo so it means even more to me. It is my grandpa and mom tattoo. It means the world to me. I wouldn't change it for anything. People may see it as just a pretty bird, but to me it's more. And the only person who gets a real say in if my tattoo has meaning or not is me. In January just before my mom went in for surgery, I got another tattoo. When my dad and sister visited her a couple days before the surgery, I had my sister get my mom to write the word 'Persevere' on a piece of paper. When they got back, I took that paper to A Brand New Tattoo and got my fourth tattoo.
So don't tell me that tattoos don't have meaning anymore. You don't know everyone's personal stories. Until you do, keep your speech to yourself.
Sunday, August 12, 2012
Lucky Penny Bracelets
Penny Halling truly is a Lucky Penny. She has overcome many obstacles that come with having Chordoma but has maintained a positive attitude.
It has been 22 years since my mom was first diagnosed with Chordoma. They told her 5 years. Not only has she lived longer than anyone guessed, she's done it with a positive attitude. Most of the time I feel like she has more confidence and hope in this situation than I ever did or would. She's pushed through all the surgeries, radiation and negativity by simply hoping for another day, month, year. I look up to her so much. I envy her positivity, her hope, her love. There's nothing that could bring her down.
Bracelets are $3/each. Just let me know if you are interested in buying one. Money raised will be donated to the Chordoma Foundation in honor of Penny Halling.
It has been 22 years since my mom was first diagnosed with Chordoma. They told her 5 years. Not only has she lived longer than anyone guessed, she's done it with a positive attitude. Most of the time I feel like she has more confidence and hope in this situation than I ever did or would. She's pushed through all the surgeries, radiation and negativity by simply hoping for another day, month, year. I look up to her so much. I envy her positivity, her hope, her love. There's nothing that could bring her down.
Bracelets are $3/each. Just let me know if you are interested in buying one. Money raised will be donated to the Chordoma Foundation in honor of Penny Halling.
Tuesday, July 31, 2012
Lesson #1
When I was just a little girl,
My mother taught me much;
How to love, how to care,
How to reach out and touch.
The thing she wanted me to know,
Runs deeply in my soul,
Was that no matter where I was,
Touching others should be my goal.
Touching others in many ways,
By being the one they could trust,
To help them face their troubled times,
And to sacrifice if I must.
Sacrifice my own time, my resources
And my treasures,
By helping others I would find
A much greater kind of pleasure.
[peph]
My mother taught me much;
How to love, how to care,
How to reach out and touch.
The thing she wanted me to know,
Runs deeply in my soul,
Was that no matter where I was,
Touching others should be my goal.
Touching others in many ways,
By being the one they could trust,
To help them face their troubled times,
And to sacrifice if I must.
Sacrifice my own time, my resources
And my treasures,
By helping others I would find
A much greater kind of pleasure.
[peph]
Saturday, July 28, 2012
Country Love
They strolled down the lane together,
The sky was covered with stars.
They reached the gate in silence
And he lifted, for her, the bars.
She neither smiled nor thanked him,
For she knew not how.
He was a young country lad
And she was a jersey cow.
[peph]
The sky was covered with stars.
They reached the gate in silence
And he lifted, for her, the bars.
She neither smiled nor thanked him,
For she knew not how.
He was a young country lad
And she was a jersey cow.
[peph]
Saturday, June 16, 2012
Penny for Your Thoughts #2
"I do remember talking to her about having something that no one can see and it is frustrating when people don't understand. Neither of us can be cured but we make the most of life. I remember meeting her over at Traci and Rob's after the fire and she was there helping to pick up the pieces that were still good.
-David Koch"
-David Koch"
Penny for Your Thoughts #1
"The first time I brought John home with me, I took him to get your mom and we went to check out the new McDonald's in town. Well, it was Christmas time. Your mom asked if she could where her antler/santa hat. I said, no problem. As we waited in line at McDonald's Penny starts up a conversation with a guy in line. Once we get our food we sit down and she invites over the guy she met in line to sit with us. Well, come to find out, this guy was my step-Grandma's brother. We had great conversation. Then she asked him if she wanted to feel her hat cause she is horny....get it! The hat is a horny antler hat.
Well, after this incident we then meet up with my step-grandma Marlene at the House of Beauty. Marlene was under the dryer getting her hair processed so she couldn't hear well. For some reason Marlene asked if I liked hot sex. She meant Hot Sex the drink but Penny thought it was hilarious and could not stop talking about it all day. By this time my fiance, John, was rolling with laughter too. He was getting a sense of how weird my family was. After that we went to the printing shop to pick up our wedding invites. Where I had to scold Penny because she went behind the counter to say hello to everyone and she wasn't supposed to go there.
John and I remember this story fondly and it always makes us laugh and smile. Your mom is so special to me, she is a gift given to us to see the bright side of each situation and to not take things so seriously.
Hope this makes you laugh too Stacy!
~Trish Chee"
Well, after this incident we then meet up with my step-grandma Marlene at the House of Beauty. Marlene was under the dryer getting her hair processed so she couldn't hear well. For some reason Marlene asked if I liked hot sex. She meant Hot Sex the drink but Penny thought it was hilarious and could not stop talking about it all day. By this time my fiance, John, was rolling with laughter too. He was getting a sense of how weird my family was. After that we went to the printing shop to pick up our wedding invites. Where I had to scold Penny because she went behind the counter to say hello to everyone and she wasn't supposed to go there.
John and I remember this story fondly and it always makes us laugh and smile. Your mom is so special to me, she is a gift given to us to see the bright side of each situation and to not take things so seriously.
Hope this makes you laugh too Stacy!
~Trish Chee"
Friday, May 25, 2012
Gleevec
Wrote on April 4th:
My mom recently started taking a high dosage of Gleevec. We're not sure if it's the medicine it's self, the combination of it and her other meds or just everything overall but she's been more confused than ever. Yesterday she thought she had just moved into the apartment she's in now and couldn't figure out anything the rest of the day such as why she was there or anything. She's been living in that apartment since '07. At the moment she's not sure but she's thinking about stopping taking it. Her doctors told her - when she first got the meds - that she can try them and if she doesn't like them or has bad side effects, then she can just stop taking them.Since then dad took mom off of the Gleevec and things have somewhat gotten better. She's not as confused as that anymore, but she is still having memory issues. When I stopped by to see her a few weekends ago, she kept asking me what was going on. I had to explain about the surgery all over again. She thought it had been done on the left side of her head because she could feel the bumps there. That was the side she had the shunt put into. I explained about it and that the surgery for the chordoma was on the right side. It was hard seeing her get so upset over it. Although I think most of her being upset was over the fact that she couldn't remember what happened, when it happened and everything dealing with it. Every time I visit her, she tells me how sorry she is for being so emotional and always asking questions about what's going on and why she can't remember anything. I always tell her it's okay but really it's hard to tell her the story over and over again. It was hard going through it with her when it first happened. I know it's not going to get easier and I've accepted that. I just wish it was a little easier to hold my emotions in while talking to her so I didn't upset her more.
Saturday, January 28, 2012
The New Year
On January 1st, Penny was taken into the hospital because she was complaining of headaches. It had been a while since the first one appeared, but on the 1st she went into the doctor to see what was going on. I was asked to come pick her up to take her home after a CT scan was done. I wasn't able to so my dad headed up so he'd be there when she was done. However, the found something they didn't like and she was transported down to Rochester via ambulance. There was pressure on her brain from the fluids that were unable to drain. The reason they couldn't was because the tumor had grown back and wasn't letting the fluid drain like it's supposed to. This is the sixth reoccurring Chordoma tumor she's had since she was diagnosed with it back in mid 1990.
On January 13th I made a group on facebook to keep all of mom's family and friends up to date with everything that was going on. It was so much easier knowing we could get ahold of everyone at the same time instead of trying to remember what we told to who and if we forgot anyone. There was so much going on that I wouldn't be surprised if we had forgotten someone if we didn't create the group.
We (my dad, aunt Sandy, aunt Sally and I - with Chris Henning [my mom's best friend] on the phone) had a meeting with Dr. Vangompel and mom about a possible surgery that could be done to remove some of the surgery. All of us have had conversations with mom over the last few years where she said she didn't want to do surgery ever again because she'd been through three and it was too much for her. However, the doctor gave us statistics, facts, and a run down of what would happen in surgery. All of us went into wanting to say no. He thought it was a clear cut decision to say yes and we all thought it was a clear cut decision to say no. We listened to him for a while because having a family meeting to talk about what we should do. We talked and listened to what mom was thinking. She told us it's one more chance and she wasn't ready to die. After getting very emotional, we calmed her down a bit and went out into the hall where we talked about it a little more. Everyone except me was set on yes after that. I still had my doubts because I felt like everyone was pressuring her when we were in the room together. So I went back into the room to talk to mom, just us. She felt like she was being selfish because we all said no at first and I told her many times that this is just about her - it's what she wants. We talked through all the details and she [SHE!] decided she wanted to go ahead with it. It was then that my mind was changed and I agreed with it all. No one else swayed her mind or mine. She was scared of what would happen, but she wanted to give it a shot.
We encouraged family to call or stop in and talk to her for a couple of reasons. First of all we wanted her to know that we were all there for her no matter what, that she wasn't alone in any of this. And also because we wanted them to be able to see her just in case something did happen during the surgery since there was a chance that she wouldn't make it out. She did feel a little overwhelmed by it all but she was more than happy to see everyone. It really did help her.
January 16th, the big day. Dad, Amy and I went down to Rochester right away in the morning to see mom before she went into surgery. They told us they planned on 6/7am to start. We showed up at 5:30 that morning to make sure we got to tell her we love her and so that she could tell me happy birthday. [Okay, that part was just me being slightly selfish.] At 7:00am they took her down to get her prepped for surgery. Amy, dad and I ended up in the waiting room on the ICU floor she'd be on after the surgery was done. Surgery started at 9:57am and we got updates every two hours about how it was going. At 8:40pm the doctors called us to tell us that she'd be headed up to recovery soon. You couldn't imagine how happy we were that she made it out. It was far from over, of course. Dr. Vangompel came up to tell us what he knew. He told us that they removed approximately 70% of the tumor and that they would have to keep an eye on her the next few days to watch for bleeding, swelling, and other issues that could happen.
Once she was in her room and all set up, we got to go in and see her. She was still groggy and complaining of the pain, but that was expected. Dad and Amy stayed with her the whole time but I had to leave after a short period of time. It got to be too much for me. Hearing her talk about how much it hurt and seeing her like that... I just couldn't handle it. I started crying and went back to the waiting room to calm down while they gave her pain medication. After a while Amy came back to get me. I went back in to see her again and it was hard but she was going in and out of sleep and the medicine was working. It wasn't until around 11:30pm that we finally headed home.
On January 17th, Amy called mom's nurse. The nurse said that mom was still in pain but she was sitting in a chair. Amy said she sounded wore out but she was talking. January 18th mom was no longer an ICU patient. That day she got moved back up to her old room where we went to see it. It was an amazing day. Dad told me that on the 17th she was still in pain and not very happy, but when we saw her on the 18th she was smiling, joking and having a great time. It was definitely a lot more like her.
January 20th she was moved to the Durand hospital. She's there now doing speech therapy, physical therapy, etc. and she's closer to home so it's easier for family and friends to visit her. Cards, stuffed animals, pictures and flowers have been sent from various people to cheer her up and wish her well. One set of flowers which was from where I work - from people who she's never met before that were thinking of her.
Some updates from friends and family on the facebook group page:
Thanks to everyone who is thinking about her. It really does mean a lot to all of us. Any questions, thoughts, etc that you have, you can get ahold of me on facebook, here or e-mail me at stacyhalling@yahoo.com
Also, if I have forgotten to add something, I'm sorry. There's been so much going on that I do forget to mention/share some things and it's not on purpose. It's just hard to keep track of what I have told to who and so on.
The first three in 1991, 1992, and 1993 they did surgery through her nose. Then in 1994 they decided to try proton radiation at the Loma Linda University in California. It wasn't until 2003 (I think, I'm not exactly sure at the moment and everyone else is sleeping so I can't verify this) when it came back again and the option that was chosen at that time was Gamma Knife radiation. Now, in 2012, we were faced with another decision.In order to drain the fluids on her brain, they did surgery for a shunt. Everything seemed to be getting better and a lot of the stress went away for a little while. She was still in the hospital and we still had to figure out what all was going on with the tumor but for the time being we all just took a deep breath and tried to keep mom happy.
On January 13th I made a group on facebook to keep all of mom's family and friends up to date with everything that was going on. It was so much easier knowing we could get ahold of everyone at the same time instead of trying to remember what we told to who and if we forgot anyone. There was so much going on that I wouldn't be surprised if we had forgotten someone if we didn't create the group.
We (my dad, aunt Sandy, aunt Sally and I - with Chris Henning [my mom's best friend] on the phone) had a meeting with Dr. Vangompel and mom about a possible surgery that could be done to remove some of the surgery. All of us have had conversations with mom over the last few years where she said she didn't want to do surgery ever again because she'd been through three and it was too much for her. However, the doctor gave us statistics, facts, and a run down of what would happen in surgery. All of us went into wanting to say no. He thought it was a clear cut decision to say yes and we all thought it was a clear cut decision to say no. We listened to him for a while because having a family meeting to talk about what we should do. We talked and listened to what mom was thinking. She told us it's one more chance and she wasn't ready to die. After getting very emotional, we calmed her down a bit and went out into the hall where we talked about it a little more. Everyone except me was set on yes after that. I still had my doubts because I felt like everyone was pressuring her when we were in the room together. So I went back into the room to talk to mom, just us. She felt like she was being selfish because we all said no at first and I told her many times that this is just about her - it's what she wants. We talked through all the details and she [SHE!] decided she wanted to go ahead with it. It was then that my mind was changed and I agreed with it all. No one else swayed her mind or mine. She was scared of what would happen, but she wanted to give it a shot.
We encouraged family to call or stop in and talk to her for a couple of reasons. First of all we wanted her to know that we were all there for her no matter what, that she wasn't alone in any of this. And also because we wanted them to be able to see her just in case something did happen during the surgery since there was a chance that she wouldn't make it out. She did feel a little overwhelmed by it all but she was more than happy to see everyone. It really did help her.
January 16th, the big day. Dad, Amy and I went down to Rochester right away in the morning to see mom before she went into surgery. They told us they planned on 6/7am to start. We showed up at 5:30 that morning to make sure we got to tell her we love her and so that she could tell me happy birthday. [Okay, that part was just me being slightly selfish.] At 7:00am they took her down to get her prepped for surgery. Amy, dad and I ended up in the waiting room on the ICU floor she'd be on after the surgery was done. Surgery started at 9:57am and we got updates every two hours about how it was going. At 8:40pm the doctors called us to tell us that she'd be headed up to recovery soon. You couldn't imagine how happy we were that she made it out. It was far from over, of course. Dr. Vangompel came up to tell us what he knew. He told us that they removed approximately 70% of the tumor and that they would have to keep an eye on her the next few days to watch for bleeding, swelling, and other issues that could happen.
Once she was in her room and all set up, we got to go in and see her. She was still groggy and complaining of the pain, but that was expected. Dad and Amy stayed with her the whole time but I had to leave after a short period of time. It got to be too much for me. Hearing her talk about how much it hurt and seeing her like that... I just couldn't handle it. I started crying and went back to the waiting room to calm down while they gave her pain medication. After a while Amy came back to get me. I went back in to see her again and it was hard but she was going in and out of sleep and the medicine was working. It wasn't until around 11:30pm that we finally headed home.
On January 17th, Amy called mom's nurse. The nurse said that mom was still in pain but she was sitting in a chair. Amy said she sounded wore out but she was talking. January 18th mom was no longer an ICU patient. That day she got moved back up to her old room where we went to see it. It was an amazing day. Dad told me that on the 17th she was still in pain and not very happy, but when we saw her on the 18th she was smiling, joking and having a great time. It was definitely a lot more like her.
January 20th she was moved to the Durand hospital. She's there now doing speech therapy, physical therapy, etc. and she's closer to home so it's easier for family and friends to visit her. Cards, stuffed animals, pictures and flowers have been sent from various people to cheer her up and wish her well. One set of flowers which was from where I work - from people who she's never met before that were thinking of her.
Some updates from friends and family on the facebook group page:
Nadine is a great woman, who also has Chrodoma, that we met in Maryland at the Chordoma Conference.
Some of Amy's friends.
My aunt, Penny's sister, Sandy.
Thanks to everyone who is thinking about her. It really does mean a lot to all of us. Any questions, thoughts, etc that you have, you can get ahold of me on facebook, here or e-mail me at stacyhalling@yahoo.com
Also, if I have forgotten to add something, I'm sorry. There's been so much going on that I do forget to mention/share some things and it's not on purpose. It's just hard to keep track of what I have told to who and so on.
Tuesday, January 17, 2012
Surgery
Mom had surgery on January 16th to remove the tumor. I will post more here later once I get the time/energy to make a detailed post about everything such as when it happened, what's going on and everything.
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