friends help: The local news is scheduled to air my story tomorrow night! - Help.com

Thanks everyone!

Queen- I had a very rare form of bone cancer (called Chordoma) in 2002. My doctor was treating me for mild arthritis for several months when I actually had a malignant spinal tumor and by the time it was found I was also diagnosed with paraplegia but I didn’t give up on myself and I got movement back in my feet, then legs. Then I learned to walk again. I have been through a lot of other stuff in the six years since but it was time to share the story of Chordoma. It was a disease people got usuually in their 50’s - I had it at 42. It is thought to be from a problem in the womb. Mesenchymal cells form an initial spinal column until the real one is in place at about month 6 - and then those mesenchymal cells are supposed to disintegrate. In rare cases they do not and can later grow into tumors along the spinal column. The most common chordomas are clival chordomas which grow at the base of the skull and can also cause brain tumors. I posted another post about helping a guy I met through a Chordoma support group this past February when he came to my town for surgery and the start of treatment. The second likely site is Sacral Chordomas which are at the base of the spine in the hips. Mine was Spinal Chordoma at T12. The doctor said I actually had the rare type of chordoma and called it Ivory Chordoma. It caused change to the bone.

I have posted a few blogs on www.myspace.com/diane_stacey about my illness, learning about the tumor, and surgery. I haven’t told the whole story but this is a big step for me in recovering emotionally.

The reason I am sharing my story so openly is because I mentioned this is usually an older person’s disease but there are now children as young as three years old who are getting chordomas. The statistics are 1 in 2,000,000 in the U.S. and 1 in 8,000,000 worldwide. I try to not look at statitistics as much because most of the doctors said I would have about 5 years after diagnosis - they started research last year (The Chordoma Foundation - which has been on national news) and they now say seven years. I will hit my 6th year anniversary this June. I am fighting hard to get disability because my surgery was so invasive and left me with a lot of physical limitations. So please excuse typos. I think for me, sharing my story is a step of taking back the power my tumor took from me (because I lost my job and independence, etc.).

I just want you to know I do not think about dying a lot. I have to look it in the face and fight and I found out I was pretty strong. I live though with an awareness that life is short and comes with no guaraantees so we have to make the best of it. I try to be positive and I try to be compassionate toward any kind of suffering. Hoe that helps! You can ask questions if you want to. Or read myspace if you have time. I talk a lot, I know.

Fizz wrote:
I just snapped that you live in Cincinatti, I was just up that way weekend before last settling my father in laws estate. He lived in Ft. Thomas, I have other in laws that actually live in Cincinatti. Congrats on having your story aired.

Ft. Thomas is just across the river! If you are ever back this way, let me know and we can get together! I’ve lived in this area my whole live and I like that most of the people here are polite. If you know the areas, I’m in Green Township (near Cheviot)!

2greeneyes wrote:
Great Kneady.I would love to see it. Link us if you can. I think cattail has this same condition. Did you invite her? I am so happy and thankful you are helping get attention and help with this horrible condition. Good luck and thanks for sharing.

I didn’t know Cattail had this but I did invite her! I share as much as I can about my life so maybe it can help someone. It is hard having something rare because you initially don’t have someone to talk to about it. My neurosurgeon was interviewed for the story to give the medical side - that is what the hold up was - he is so busy. He always says I am his prize patient because I overcame my paralysis. So maybe I can help someone who struggles with that too so they don’t give up.

There is a Chordoma group on MSN. It is not always positive but it is a good place to go for answers and to talk about the disease. I’m on a little break from it right now but we just try to help each other through it.

Fizz wrote:
I really don’t know very much about the area, but we will have to come up there again for more estate business, probably this summer, so I will let you know and we can meet for dinner if you’d like.

Yes, let me know! I’m sorry to hear about your loss. Sorry if I haven’t said that.

♀lil_bit_shi♀ wrote:
that is awesome… keep us posted… as for me watching.. i cant wait… im so excited… if you know the name of your local station on which its going to be on.. i can actually google everything and get the url of what site it will be on…

Thanks Sweetie! It is WKRC TV, Channel 12 Cincinnati. The Medical Edge is the health portion of the news and the reporter’s name is Liz Bonis. She is lovely! Very sweet.

Anonymous wrote:
I just looked at your profile and saw your amazing life. Bringing attention to this disease is wonderful and I hope you, yourself are benefited from your effort.

Someone was telling me about this radio show that you may enjoy listening to, I hope you take the time to check it out online, but you will probably find it on your local stations
http://www.joniandfriends.org/pg_radi…

Additionally, I found a link from another radio station I once listened to. This is an interview with a young man doing research on your condition while studying for his degree at Duke. After finding out that he had Chordoma, he found one of the top researchers was a professor/researcher on his campus. He and his mother have set up a Chordoma foundation to fund a way to stop this disease. I hope it offers you hope as you persevere.
http://www.wunc.org/tsot/archive/sot1…

I will surely watch your segment if you post a link. Take care of yourself.

Thanks for your kind words and encouragement! I’ve became a primary caregiver at the age of 4 when my Grandma was injured and always took care of myself and other people …. until I got sick and I have been learning to ask for help (a hard lesson for me!). My Mom recently said something that struck of brilliance. She said when you lost your job sweetie, you lost your identity too and you just need to figure out who Diane is now with these changes. I have learned I can still help, just in a different way and every thing I do that helps someone, helps me. I still have a lot to get through but I don’t sit and focus on the negative. I’m making baby steps and I really needed to share my story.

It was funny during the interview, my Mom was in another room (she didn’t want to be in the way) but she said all she could hear was giggles. She said she wished she had stay with us (like I asked her to) because she said it sounded like we had fun. The first thing Liz said to me, had a powerful effect. They had read all the information on what I experienced and the research on my cancer. She said the hardest part of the job is going into someone’s home and see what illness does. She said they weren’t sure what they would be seeing that day but were surprised in a good way. So I shared with them by telling my story FINALLY that one guy I used to work with who whenever I saw him after my back surgery, well he would finally know what I’d experienced. For a couple of years he always asked “How’s that knee?”!

Now I can focus more on my fight for disability rights and I’m eventually going to put my life into a book. Liz said the story turned out great! I can’t wait to see it!

I forgot to mention. Josh, the guy you mentioned with the chordoma foundation, urged me to participate in a chordoma familial study with the National Cancer Institute. They are reviewing my information and I should hear soon whether they want me as part of their study. The issue seemed to be that I was the only living relative with either a chordoma or brain tumor so I am not sure they will want me. But I think I’m trying to be part of the education of this disease and many part of figuring out the puzzle or contributing to the cure. While I am personally afraid of medicine (with my White Coat Syndrome from my misdiagnosis) and tired of more than my fair share of needles, tests, etc. I decided to at least try to qualify for the study because they are looking at whether there is a genetic predisposition to chordomas. So if they want me in the test, I will face a little more physical stuff but I think offering is the right decision for me. In the last four months, two members of the chordoma group passed away from the disease. Then in February, I helped a newly diagnosed patient deal wtih his diagnosis, gather research to make the right decision for him and helped him get through the worst part of treatment. He’ll be back here for another visit with the surgeon in May and it will be good to see him. I think no matter what we experience, we all need support and compassion so I feel lucky to have a place like this where I have made friends.

cattail wrote:
Hi there, Kneady…. that’s great news!!! I won’t be able to watch since I’m in NJ, but it would be great if they do put a story online!!! :)

I don’t have the same condition as you, at least not that I know of… I’m just going through back problems, herniated disc and pinched nerves, sciatica, unable to walk much at all and not getting any better…. well there are other problems too with my neck and upper spine probably, but all this is why I was starting to wonder about disability. I’m back at work after being out for months, but I’m really having hard time and it’s wearing me down badly, maybe making things worse… so I worry.

I’m really glad you don’t have this! That is great news. I had to have two vertebrae (C5 and C6) removed from my neck in September 2006, I think they were hiernated. My chiropractor didn’t want me to go ahead with surgery because he thought it would just aggravate other vertebrae down the line but it helped. I still have a lot of pain but before those were removed, my shoulders were always dislocated, my arms hurt, my neck, head, back all hurt worse and my left thumb was dislocating too.

I understand pain. As far as work goes, the best advice I can give is if you start to have any problems, you just document things as they happen. As long as your employer agrees to one reasonable accommodation, you’re covered under ADA laws if you live in the U.S. If you ever need information on that, just shout or email. Feel better! Take it easy.

Thanks for the prayers! I take all I can get!!

Okay so I do not have many recent photos of myself but I found this one at the Newport Aquarium in the bird area where you can feed the birds and they sit on your head and arms. It was fun! I’m the one wearing black! (As if you’d mistake me for a bird!)

Good night everyone!!! I have been online too long tonight and now I am hurting so I better try to get to bed early.

Regards,
Diane

sansceriph wrote:
diane, this is wonderful news. ask the station to get you a copy of the story on dvd, and please give us the link when they put it online. you’ve gone through a lot, but you still manage to bring light into people’s lives.

Thanks for the suggestion! I left a message to see if the station could give me the story on DVD and Liz said no. She said that there is a service you can call after the fact that can get you a copy for a fee and gave me the number. She asked me to call the doctor’s office and let him know the story was airing today. She said maybe they could tape it for me.

Also, she said there will be a link on the station’s website tomorrow (they show up online after the story airs). So we can share that tomorrow.

tictactomm wrote:
Good for you Numby! (That’s what I’ll call your numerologizing self until you change your name ;)

My stomach was feeling kind of blah and I was thinking today might not be one of my better days but you just made me laugh and I think I feel a little better. I’m going to go splash some water on my face and see if that helps and maybe drink a little pepsi - it is likely my blood sugar dropped with the way I am feeling.

Before I go through, I have been trying out a few things. I decided as I am working through names that I liked a few different ones. I use ‘allwrites’ on one site (i forgot about which is an 11 - great number) but that fits the site. So I tried BrighterBlessing on another (an 8 - great number) and I entered a contest to meet Sarah Jessica Parker who’ll be in town Thursday. They heard yesterday I was a finalist in the contest so we’ll see what happens!

Still working through some more names. I liked too many!!

Hugs from Numby! Hmmm, that is a 3 - which means social and fun!

Thanks! I had a minor setback this morning (in spirit) and I appreciate reading that! Laughter is the best medicine!

Quick update on the news story tonight. Still on! Liz said there will be a link posted to the story on their website tomorrow (she said they post to the web the day after the story airs). So you’ll get a chance to see it, whomever is interested! I told one of my friends to remember the camera add 10 pounds and in addition to the news camera, I think there were a couple of digital cameras and a couple disposable (one-time use) cameras in the room!! Just kidding. Chordoma seems to mess up our hormones so I have gained a lot of weight but I have learned to love my self regardless of the outside. I just thought that was funny and my friend thought I was a little ‘coo-coo”! I try to laugh as much as I can!!

I also asked if I could get the story on DVD from the station and Liz said she had no way of getting it to me. She gave me a telephone number for a service where you can pay to get a copy but my brother is going to try to tape it for me. She asked me to let the doctor know we’ll be on TV tonight so I called and left a message for him when the office opened.

Liz told me to let her know when I hear back from the NCI regarding participating in the chordoma familial study. If I qualify, Liz said that would make a nice follow-up story.

I don’t think I will be on-line much today, having one of those emotional days myself and am not feeling so good physically. I am going to try to use the energy I have to get a couple things done.

Have a golden day!

Regards,
Diane (aka Numby! - That reminds me of watching Gumby when I was young - he was green…what color do you think I am?)

sansceriph wrote:
many stations use a service for “dubs” so that’s probably fine.

I guess that is what it is. She told me they charge for the service though and I don’t have the money for it. I am going to keep trying to find someone to tape it for me. If not, I will call them and see how long the story will be there if I can afford it later. If it is meant to be, I will get it. If not, I am just glad it is going to air.

♀lil_bit_shi♀ wrote:

kneady wrote:
Thanks! I had a minor setback this morning (in spirit) and I appreciate reading that! Laughter is the best medicine!

Quick update on the news story tonight. Still on! Liz said there will be a link posted to the story on their website tomorrow (she said they post to the web the day after the story airs). So you’ll get a chance to see it, whomever is interested! I told one of my friends to remember the camera add 10 pounds and in addition to the news camera, I think there were a couple of digital cameras and a couple disposable (one-time use) cameras in the room!! Just kidding. Chordoma seems to mess up our hormones so I have gained a lot of weight but I have learned to love my self regardless of the outside. I just thought that was funny and my friend thought I was a little ‘coo-coo”! I try to laugh as much as I can!!

you are you… and as i always tell everyone… weight does not make a person.. its the attitude of that person.. and what i see.. you are a great person..

Sorry if I made you think I didn’t like myself. I don’t care about weight, was just trying to be funny with my friend but I should not have shared that here. She’s always sending me the blonde jokes so we have this odd humor between us. There is one thing about my body I do say I would like to change one day - my nose! But that is the only real criticism I have and it comes from a lifetime of teasing because i have what my family calls the “mini-me” version of the Stacey nose. Long story but I am okay with myself, don’t worry about me.

I’m logging off now, I feel really sick today. Take care all.

cattail wrote:
Thanks Diane, for more info… I think I will start keeping notes on how I’m doing at work… couldn’t hurt to have documentation!

I hope you feel better!! Sorry you’re having a lousy day… *hugs*

One day if you want to hear, I can tell you what I experienced after I had cancer at work. I’m still healing emotionally from it. I still have nightmares about it. If you need to get notes from your doctor to make sure they approve what you need, then ask for them. I got my doctor to request a better chair because the one I went back to hurt me to sit and they ordered one that had all sorts of adjustments and it wasn’t so bad sitting there. That is a pretty reasonable and inexpensive thing. Also if you need to get up and take breaks (to walk) so you can better manage pain or not get stiff, have the doctor write that too - along with any weight limits (like I wasn’t able to lift more than 30 lbs but now that is down to 20 lbs) or if you need to adjust hours to do physical therapy or exercise.

Then if you get into problems - like someone makes comments about your health or they talk about your health without your permission or you get penalized for taking off or being sick, you write dates, times, people present and what happened. If you can get any witnesses to sign that is even better. I have a couple of good books that I will look for this week and shout you so you can check them out at the bookstore and see if you can benefit from them.

I worked in human resources for 8 years in my last job and that is where I got sick. When I ended up in the hospital, my director called me and said ‘Great job Diane, perfect timing. We’re in the middle of negotiating employee health care premiums for next year and you just single-handedly jacked up our rates. You couldn’t have waited…” It really hurt my feelings. Then when I went back to work (after 5 months off), they decided to downsize my department and all three of us with cancer claims were on the list. I told my boss when I found out I was on the list and said I was going to get an attorney so she left and I stayed. If someone mentioned my cancer or asked a question, the managers would change the subject. I went through a lot. The last year was the ugliest but I was harassed so badly that I haven’t been able to deal with them. I know the way I was fired was illegal and I’ve not been able to face them. Then two months after they fired me (they wouldn’t let me return from my last medical leave), that same director created a new project about me. He instructed the file clerk to document that I didn’t know my job, my systems, what I was doing and to prove that I lied about the system problems (which were all documented by the vendor). I was on the vendor’s customer advisory board the last two years in the job and I was also on a customer user group. Every problem we had, I tried to find solutions and they were the same problems every other customer had. I had all that documented. I still feel harassed and I lost my job in December 2006.

And important….keep your documentation at home. I was not even allowed to go in and collect my personal things. Then UPS dumped about 20 boxes in front of the door one morning. I had to ask someone to move them to the garage and I haven’t been able to even look inside them. I have no idea what they sent to me and I am afraid to look. It was hard enough being sick and then I had this too and I know I need to do something about it because it is not just about me. I started working on finding documentation and trying to recreate and I’m having all sorts of memories of illegal things that happened when I worked there. And keep your doctor in the loop if you start having problems at work. I don’t want you to have the same experience as me. My company even sent me to the regional office in Latin America to do training for a week. Every time I had traveled, I had to leave on Saturday afternoon and spend my weekend in another city to save money for the company. The regional office asked me to be there to start first thing Monday so again I went down on Saturday to save money and they wanted me to spend time out of the office on Saturday so I was scheduled to return on Sunday afternoon. But the plane landed and a wing was damaged so we got stuck there for 24 hours. Instead of getting home late Sunday night, I got home at 4 AM on Tuesday and with my health, I was just too exhausted and in so much pain from sitting in airports, walking through airports, lifting luggage and sitting on planes. So i called and said I couldn’t make it in that day. The director called me in the next day and charged me with vacation time because he said I made no attempt to even show up for work and that was expected of me. Then I found out he’d given one of my healthy coworkers an extra week of vacation that year she was not entitled to. I could tell you stories.

I don’t want you to go through any of that. It made my health so much worse.

♀lil_bit_shi♀ wrote:
hope you feel better… great big hugs…

Thanks shi! I tested my glucose mid afternoon and it was low. My Mom said she didn’t think I had eaten all day. I forget to eat some times. So I made a quick turkey sandwish and got into bed for a little while. I feel a little bit better. I felt like I was going to pass out and be sick most of the day but that is feeling better.

I got up in time for the news. i normally don’t watch the news but today was the story. I can post a link tomorrow, it will be on their website. I was so disappointed. I spent all this energy trying to educate about chordoma and the story was about back pain and getting screened. I feel deflated.

Anyway, I will post a link tomorrow. I’m not feeling so great and I am feeling down myself so I will see you all tomorrow.

Wanted to provide an update on the story. The link is not yet available on the web as they are correcting errors. I will post when it’s there. There will also be text about the story, along with the video.

I wrote a message here that was too long and got the message that discussions are encouraged but I shared too much! So I copied the information to a blog on myspace and maybe that is a better place for it. I’ll update that and also here when the link to the story is on the station’s website.

When the story was over, I felt as thought I had won an excruciating marathon and they only reported on the muscle cramp I had before the race began. The story wasn’t really about chordoma, it was more about back pain and screening.

So I guess I will just look for a better way to share my story. I am disappointed. I had a big release of tears last night and so I finally imagined all the people I have met on places like this site standing around to give me a big global hug and I finally stopped crying. So I have to put this behind me and focus on fixing something about my life. I had feeling the blues and I know not feeling well makes me much more emotional. So have a beautiful day my friends and when the link is available, it shall be posted.

There is text up on the station’s website on the story but not video so I will wait to post the link and check it later. I can try writing to Oprah, I can believe she’d be a good person to what to share my story. :-) I’ll try so keep me in your thoughts!

Thanks for your friendships, It means a lot to me.

As far as working with a disabilty or health problem. I have a friend (another chordoma patient - we network!) who just lost her job. She hadn’t been there long. But she was called in for a 30 day review. The manager said they noticed she was taking too long in going to the bathroom. She said they’d been discussing her and wondered if she had a drug problem. The manager also shared that after they’d hired her, they decided to google her so they found out she’d had cancer on the NCI’s website. My friend had a sacral chordoma and since her surgery, she has to catherize herself 3 times each day because she can’t use the facilities normally post surgery. She was horrified. Things just got worse from there and they started harassing her and even wanted her to post a note on her computer monitor whenever she was going to be in the bathroom.

People don’t understand what you experience and how you are changed by a tumor or your treatment. I’ll share here that I have some of the same side effects as my friend and it makes it hard to go out. I do not have to drain my own bladder but I share a side effect of chordoma with her. I have rectal bleeding. The doctors do not care and they offer no help. I guess I will also share that we have hormones off because chordoma seems to effect the thyroid and pituitary so your metabolism is whacko and you gain weight often while others with cancer lose weight. I don’t care so much how much I weigh and I have gained a lot of weight since my surgery. But it would be nice to lose some because I think it affects pain levels. But with the invasiveness of my surgery (they had to access the spine from the back and front - 360 degrees around the spinal cord, there are a lot of physical limitations so one thing I can’t do is twist at the waist and that makes days of diarrhea very difficult. Before I left the hospital, the occupational rehab women gave me a pair of kitchen tongs to use for wiping and I was stunned that someone would give another person a metal appliance to use for cleaning up. I know there were days when I would have to run home at lunch time to clean myself up because with the setup of the bathrooms at work I couldn’t really take care of myself there. I undestand now why they used to put a sink inside the handicap stall. I don’t mean to share too much information but I think people can be like animals in the wild kingdom. When one is injured, the strong survive. Employers don’t know your strength and i haven’t yet dealt with that issue which left great scars but I am starting. So don’t let that happen to you.

My friend is a champion! She immediately got counsel and her attorney is going after these people to get justice for her and make sure they don’t do it to someone else. After 8 years in HR, I could tell you horror stories about how companies think about or treat employees, especially if you aren’t at the top of the hierarchy. I am powerless of many things but I can offer a little help Cattail. I am working on letters to politicans this morning and my disability appeal but later I will look and see if I can email you from your profile and if so I will send you some information that might be helpful. If you have questions, don’t hesitate to ask. We help one another here and we learn together.

http://www.local12.com/content/medica…

Here is a link to the story. I am not sure the video is still there but one of my chordoma buddies (we are rare but we network) wants me to get the video and put on YouTube. Never done that before but I guess if it doesn’t take long I can figure it out. I am waiting for permission from the station and I found a friend who has a relative who works for the station so I think I can get a copy of the story without much grief.

cattail wrote:
Thanks so much, Diane. Oh, I am just horrified to hear what you and your friend have gone through with the jobs…. OMG… posting notes to go to the bathroom?! And people questioning how long you’re there? That’s pathetic. Where is the compassion??

So sorry for all you’ve gone through… and there’s more difficulties than most people realize for sure. Really hell when you can’t even “wipe”… I hope there’s a better solution than kitchen tongs.

Thanks so much for sharing SO much info Diane. Oh, you are just amazing and strong… and I thank you for your friendship!!

I don’t think I’m set up so that people can email me, but I will try to fix that now if I can figure it out!!! :) I know you can’t even post an email address here or they remove it, so hopefully I can change the setting!!

*hugs*

Hi Sweetie, I guess the more you learn about a person, gives more insight into them. Now you know more about me and why I try to be positive and compassionate. I know I have no idea what someone else is dealing with and I keep that in mind that they need me to comfort them and not add to their stress. I know we all have stories! I couldn’t believe at the time there was no solution because I’m not the only chordoma patient with this issue and I finally recently saw a tool in a healthcare magazine for less than $100 that was designed for that purpose. When I have the money, I am going to order one! Anything to make life easier.

I am FINALLY starting to feel better and actually ate something tonight. I hope for a peaceful night of rest. I got all my letters written to my politicians today. I still have to write to Hillary Clinton because her people called me last month and wanted my vote, it was one of her closest friends. I told her I lost my faith in politics and she asked me to share my story, then took my personal information and told me how much Hillary would care and they would call me the next day. She said Hillary could make calls to my Senators in Ohio on my behalf and get me help. Guess what I got? An email the next day that was a generic - thanks for your support we couldn’t do it with out you and here is how you can donate to the campaign. So I am just going to write and let her know how that made me feel. I made a list of a couple things to do tomorrow too so I am going to start pushing through and getting some of these things off my shoulders. Wish me luck!

Okay - to do email, go to your friends list and there is an envelope icon next to each person and it probably has a green/red circle. If you click on that, the person can then email you from your profile. I have it turned on for all my friends so if you prefer, just email me from my profile and I will have your address that way and can send you some information.

I’ve had communciation with the reporter and she says we can do my story in short bits and we might do another interview - who knows!

Love,
Diane

Anonymous wrote:
Let’s hope it brings needed attention to this cancer…hope you are feeling well.

Thanks Sweetie! I had a couple rough days but am finally feeling much better this evening. I even ate something a short while ago.

I got a special gift in the mail today! Have you guys ever heard of the band “2002″? Such a wonderful group and such beautiful music. I was introduced to it in massage school and I’m sure I sold many copies of their CDs to my friends, classmates and clients!! I came across their website last week and wrote and asked for an autographed photo (I’ve been collecting those for years and I have a LOT by now. It is a stress release - something mindless for me to do and only takes a minute here and there). Anyway, Pamela emailed me and invited me to join her online group. She not only sent me an autographed photo today but also their latest CD so I will listen to it tonight before I go to sleep. It is healing music! I can’t wait to hear the new stuff. River of Stars has always been my favorite!

Wasn’t that sweet?! Tomorrow I have to log on to their site and say thanks! If you have never heard them, google 2002 band and find their official site. You can listen to their music there. It is so peaceful! I love them, my favorite group!!

We do have a chordoma group on MSN where we help each other through diagnosis, treatment and after care. We lost two members in the last quarter so it has been hard. I’m trying to do my part to educate people because there aren’t many people who’ve heard of this cancer. So I will keep working with the local news and I think I am going to try writing something for the newspapers and I’ll write to Oprah! There is a Chordoma Foundation, they are actually having a conference this weekend - the first actual meeting for patients and caretakers in Bethesda, Maryland. I couldn’t afford to go but there ia always next time! The news station was kind enough to post a link to the chordoma foundation on their website so maybe we can raise a little money for research.

I spent a little time helping educate the cancer care group tonight too with more information on chordoma. Thanks for all your support!

That for reading the story. I liked the text better than video. It was more back pain and screening. It took my back to being discounted in my earlier experience.

Well it sure sounds like I have a lot of energy, huh? I really do not, I force myself move, something my Dad taught me. You should have seen how much i could accomplish in the “old” days! But I try not to look back with envy, just try to start working on this pile of stress and as the little things get lifted, it seems like I get a little more done. I really hope that I can work again one day. It is so hard for me to sit and by late day I am so stiff lately.

And thanks Shi! I needed to hear that. When I was in the hospital in 2002 with my tumor, one of my coworkers and her sister came to see me. They had both been clients of mine in the clinic at massage school. Anyway, her sister mentioned her neck hurt and she was numb down to her fingertips. I made her promise me that she’d call the doctor the following morning. I told her one thing I have learned is that pain and numbness is a sign that something is wrong. She went to the doctor the next day and within the week was in the same hospital as me having brain surgery for cancer. She had a tumor and had waited too long and part of it was in a place where there could not get to it. She is still here last I heard but she had to move into a nursing facility because she was not able to take care of herself. Her sister turned her back on her because she compared her to me and said why can’t she do as well as you. I told her she’s doing the best she can and she has something different and she needs your support. Anyway, I am glad you went and I hope someone reads the story or even heard the video and gets pain checked out. It is really hard having someone sit you down and say ‘you have a tumor’ or ‘you have cancer’. But once you survive the news, you put together a plan and move forward.

The reporter and I have been trading messages and if the NCI wants me in their chordoma study (though I hate the idea of needles and more tests…) the station wants to do a follow up story and keep up on me so that is good in getting more information out. Liz said with TV they can only do little bits at a time but eventually we can get the whole story. She thinks I am an inspiration, that is always motivating. I’ve asked if we can post the video on youtube. I expected it to be on the site today with the text but there were several mistakes in the video. They corrected the text and maybe they decided to not post the video (I’m not sure). If I get it, I will share it! There was a link to the chordoma foundation on their site too. I had asked them to do that in case people wanted to read more about it or donate for research.

Here is a link to the foundation, in case you want to read more about the research going on:

http://www.chordomafoundation.org/

I guess I should email Josh and let him know there is a link to the foundation. I think he keeps track of that and he’s been in the news a lot lately. Well I am really hurting. I wanted to take time to write ‘mi hermano’ tictactomm and tell him his name is a 9! But I am exhausted and my back feels likes it is breaking so all I can say is ‘catenga buenos noches! hasta manana!’ (have a good night, see you tomorrow)!!

Shi, please do not ever feel like you can’t say what you need to on my post. I really care about you and I’m praying for you. You know I am a spiritual person versus religious but I studied many different types of healing arts before I got sick and I really believe the mind is so powerful that when combined with emotion, it creates our reality (not saying there that either of us deserved tumors or did anything that caused them). I just think we have some say in things beyond medicine.

I had a malignant spinal tumor and the doctors had to to surgery 360 degrees around my spinal cord. They couldn’t figure out how I walked into the hospital (as funny looking as that was with foot drop) but I did. They prepared me to spend life in a wheelchair and diagnosed me with paraplegia before I knew what type of cancer I had. But I decided I wasn’t going to accept that and I put the words right out of my mind. I believe in miracles and I believe we have power within ourselves to heal. I am in awe that a person can create another life, give birth and heal completely from all those changes and delivery. I think maybe that is why we give birth so we have an example that the body is such an amazing thing!

Have you ever tried guided imagery? That reminds me I was supposed to find out some information for someone on that and I forgot (my memory isn’t where it needs to be and if I don’t write everything down I often don’t remember). I used guided imagery in the hospital and I believe it make a difference in them getting the whole tumor out. I saw photos the doctor had taken during surgery of my exposed spinal cord and he showed me a photo of the tumor and my thought was - wow this thing was scary but it doesn’t look so scary now.

If I can help you deal with this in any way, just let me know. I had posted in February that I had a friend I met in December who was dealing with his chordoma diagnosis. He posted on our support group before Christmas that he was afraid and struggling with no answers. So I helped him gather information, I can do internet research pretty quickly (I was a systems analyst when I worked) and I helped him gather information to make the important decisions he was facing and comfort some of his fears, I do have an idea of what you are feeling and once you know what it is and how to deal with it, I hope you might feel a little better Sweetie.

I also made a tape for him of guided imagery that I had written. I have one of those soothing voices and I used to write meditations and people were always asking me to record them. I have some musicial friends and was even thinking (in the past and again this week) wouldn’t it be nice to work with them to make a meditation/guided imagery for people with cancer to help them unlock the power of the mind? So that went on my list this week. I would be happy to make a tape for you if you think that would help. I wish for you health, happiness and wholeness. So what do we need to do to help? Do you want me to see if within my cancer networks if anyone has heard of a doctor who has dealt with your condition? If that would help you, I would be happy to ask. There is a doctor here (neurosurgeon) who has a lot of training with tumors of the spine and brain. He actually did the surgery on my friend in February. Surgery was 18 hours long and this guy did it all himself. He did an incredible amount of information and put together a thorough plan. He was the resident on my case in 2002 and he is an awesome doctor. I will email you his name and information and a link to his website (later today, I have to go to the library finally and pick up two books on fighting disability system of they will send them back downtown). Hang in there, you are a strong and aamzing woman and I will help you in any way I can. You deserve to be well!!

By the way, I forgot to say….finally I am feeling better! I even slept 7 hours straight (which means I was stiff this morning and it was hard to move for a while) but I even feel refreshed!

I realized yesterday that having to fight this disabilty thing has not been good for me because I have been focusing on the things I normally do not - like life expectancy which is 7 years after diagnosis. I will hit 6 in June and I hate the idea of not having peace with whatever time I have. I know there is no one who can tell me when that time will come and I have never listened to those kinds of things but this seems to put the focus on that. The first question I had to answer was “Will this condition result in your death?” I didn’t know how to answer that because if it we have cancer, we don’t know what will cause our death right? I could be in an accident or be struck my lighting (there was probably a greater chance of that happening than me getting a chordoma). So I have to figure out how to get that out of my thoughts now. I wonder if that is why I have felt so sick since all this started (which was last September).

Well be well and take care. Be back later.

Hugs,
Diane

I know what you mean Cattail. The last year I worked was the hardest. I tried to go in early because I wasn’t sleeping and just get through the day. The group seemed to do a lot of pot luck lunches and the smell of the food would have me so sick in early afternoon and then someone would tell my boss they heard me sick in the bathroom. I would some times have to run home and take care of myself or take a quick nap trying to deal with the exhaustion. And like you say, the weekend seemed like relief but I suffer from sleeping too many hours because of the stiffness and pain. I felt refreshed yesterday from the sleeping and exhausted again today. They gave me a medication a few years ago that was supposed to help with my energy level and memory and it did but I didn’t like taking all the meds I was on so I started going off one at a time. I think I was on at least a dozen different things and I have a lot of drug allergies.

Anyway, that question, I just think i answered it - It depends on who you ask? How does anyone know the day, time or manner of their death and though I have been diganosed with cancer, doesn’t mean that will be the cause of death. I gave them the names of the doctors and told them about the last oncologist I saw. He was a “gem” and he told me I should have already had another tumor and it was a good sign that I didn’t. He also said there would be no signs of the second one and he described what my death would be like.

The biggest frustration was the lack of gathering information from my medical history, talking to the doctors on my list, getting copies of all my surgery reports and tests, what happened in the appointments with the doctors they sent me to and my assigned contact not even returning my calls. It took six months for them to tell me they agreed I would no longer do the work I had been doing but they said I had a brain and could go out and find some repetitive task. I can sit for maybe 20 minutes at a time before I start getting stiff so who is going to want to hire me. And I can’t be sure when time I will be able to get up depending on the level of pain and stiffness. I have a long list of to-dos every day and I barely get through one thing and some times nothing but I think well just take care of yourself and tomorrow hopefully will be a better day. I don’t know if anyone has ever filed a medical malpractice suit on doctors dealing with this process but I will tell you I am thinking of asking that question. The medical board is currently investigating one of the doctors. I am just so tired of fighting.

Since December, our group has a handful of new chordoma patients, we lost two members who died around the holidays, one of the guys who works with my brother shot himself in the head Thursday night and then I read here today about Jason. There were also two firemen killed here on Friday in a house fire. They went in to see if anyone was in the house and the floor collapsed and they fell through to the basement and didn’t make it out. One was the captain and she was a mother of young kids and the other was a young man who had a whole life ahead of him. I am down hearted tonight. So I don’t really feel like I can add much to people’s posts right now because I have a lot on my mind and I need a few days to overcome what I am feeling. I guess I’m sad.

Tomorrow I am going to look for happy things going on around me. I do have something on my mind and I think I will start a separate post for it because I don’t want to bring this discussion down.

♀lil_bit_shi♀ wrote:
so glad that you feel a little energized this morning… that is great… as for the tape.. i would love for you to make me one… that would be awesome… and who knows.. it might just be what i need to settle me a little bit more.. i did find a hospital in nyc that is a bit experienced with my situation… and i plan on calling them today to see what is what… hopefully they will take my medical plan seeing its through the state… idk… that would suck though if they dont because of that… i will let you know.. great big hugs.

Okay I will start working on this for you. It really helped me and I think it is always worth a shot! Thanks for the funny things you’ve posted recently, I looked at them but I don’t think I really commented yet. =)

I think I was supposed to post the names of a couple of good books that are good for employees to have if you live in the United States that explain your rights. Cattail, I think these were really for you but I’ll just share them here so if anyone else can use the information, it will help.

I actually have 3 books but I just found 2 so far as I was looking for something else. I know where the 3rd is and will post that one later. I have a PHR certification (Professional Human Resources) which just means I had to study and memorize employment laws and take a big test to get certified.

Anyway, here are two good books that I think employees should consider:

- The American Bar Association Guide to Workplace Law (Everything You Need to Know About Your Rights as an Employee or Employer)

This is a legal reference, 179 pages put out by the ABA and has a lot of good information. If you have health problems (like my cancer) and ask for a reasonable accommodation which is granted, you’re automatically covered under ADA law so it is good to know your rights. Of course this book covers all the rights of employees and not just issues like mine. It is $14 in U.S./$21 in Canada. Produced by Three Rivers Press, New York, www.randomhouse.com, ISBN 0-8129-2928-4

- The Employee Rights Handbook -The Essential Guide for People on the Job by Steven Mitchell Sack

This one is larger (about 450 pages). The back cover says this is the one book you should have in your desk drawer and I think it is a great resource. It gives examples of questions employees have and discusses what is legal and what is not and gives advice on what you should do. Published by Warner Business Books www.twbookmark.comn is $14.95 US/$22.95 Canada.

Will post the 3rd one later - it was great reference for my study/prep for the PHR exam.

Hope these help