I woke up this morning in a very bad/depressed mood. As usual, my sweetheart called me with his morning rise and shine phone call. He realized right away I wasn't feeling well and said, "go back to sleep". I didn't. I dragged myself out of bed. No, that is an exaggeration. I struggled to get out of bed as is typical, at least 80% percent of the time. Today was particularly bad, as the temperature of my house was 55 degrees. I don't heat the house at night the gas wall heater really doesn't get heat into my room unless it is turned on high and runs all night. There is no furnace for my uninsulated house. I can't afford that. It's just the way it is, and I deal with it. So, I turned on the heater to warm it up to a more tolerable level.
Then, I made my morning tea, a ritual that gives me much comfort. I have it here beside me to sip upon while I write. It will last a while as I use the biggest cup possible, using one de-caf bag of tea and one regular. A double squeeze of lemon and a little sweetener. Out of honey right now, so the fake stuff won out today. Honey actually has some proven benefits. (see pubmed.com)
I opened my laptop and began my day. As much as I wanted to get into my Chondrosarcoma account, at the last second, I opened my personal account. As usual I went to the "Bulk" email folder, the one that Yahoo dumps in whatever they think is junk mail. There were two emails from friends sitting there. One was from Jan, who lives in England. It was one of those cutesy emails, with a picture and some words of comfort and love. Boy, I needed that! I needed that so bad. I am so glad I have the habit of checking my bulk mail everyday. Most of the time Yahoo is right in dumping this stuff. But, when I find a gem from someone I love it is well worth my time and energy to check it.
There was a third email. I almost missed it! It was from memory-of.com This is where I created a memorial for my parents after they died. And another one, for Alex, my dear friend, Gretchen's son. I am so glad I didn't miss this! This email was a notice that the site was updated. That means a photo or comment was added, and I need to approve it so that it can be viewed publicly.
The second email I saw in my bulk folder was from my old friend Katherine. I can hardly believe how time has passed so quickly. She was a teenager when I met her. A beautiful natural platinum blond who loved horses (still does).
The other day, I had sent an email to everyone in my contacts list asking for a ten dollar donation to the Liddy Shriver Sarcoma Initiative. Facebook is having a "Giving Challenge". The more people who sign up and make a donation will earn money prizes for their charity. Since there is so little money available for Sarcoma research, I was quite thrilled that this opportunity for fund raising came up. Already we have won two thousand dollars. The grand prize is fifty thousand.
The email that Katherine sent me included the email I had sent asking her to join Facebook and give to the cause. It was addressed to all her friends. She included the email that I sent, and her message to her friends. Though she got a few minor facts incorrect, I began to cry in gratitude for what she did.
Hello All,
I’m sending this letter to all those I consider friends who may be interested in supporting this cause. If not, you may delete it. Below I cut and pasted a letter from my Dear and longtime friend, Elizabeth Munroz. You may or may not know that my friend, Liz has a genetic cancer called Chondrosarcoma. She was declared terminal and gave away her children at age 22. However, she survived, and now is in her sixties. She is THE longest living chondrosarcoma survivor EVER. She has dedicated her life to connecting sarcoma patients to each other (because they are so rare), to telling her story of survival as inspiration for other sarcoma sufferers, and raising awareness and money about types of sarcoma. (You can check out her blogspot below.) Typically, chondrosarcoma sufferers die in their teens and early 20’s. Some of you may have heard and seen Miles Levin from Michigan on Andersen 360 back in the spring and summer. He died in the late summer at age 18. (You can google his name for more information.) There are several types of sarcoma. Most affect young children and teens, and there are only a few cases each year, worldwide. There really isn’t much treatment for it, and there isn’t much money for it either. So, I am sending this email from my friend Liz. This IS NOT a scam. Perhaps you cannot donate at this time, but in the future, perhaps you can. So, hang on to the information. Also, if you know of others who may be interested in supporting this cause, please send it on. I don’t normally send stuff like this, but this is important.
Katherine
This is the letter I got from Liz:
I'd like to think that if I were to ask you to give me $10, you would give it to me, no questions asked. I'd like to think you know me well enough to appreciate what I have been through with the bone cancer.... Chondrosarcoma... that I have, so far, survived 40 years since diagnosis.
I am asking for $10 dollars, not for myself, but so there can be research to cure the kind cancer I had (or is it have? I'm not sure yet with these lesions in my brain).
You may think that your giving a donation to American Cancer Society would be sufficient, but they take 65% of each dollar and keep it for operating expenses. (Really, I can send you the proof. Just ask.) The other 35% might go to research but never to Sarcomas. They are so rare that it is not worth the financial investment. Only one percent of all adult cancers are sarcomas, and therefore it is not something the pharmaceutical companies will make a profit from (sorry, but that is the way it works). So far, there is no form of chemotherapy that will cure chondrosarcoma.
There is a catch to this request. The fund raiser is occurring on Facebook. It's a competition between different charities up until February 1st. Last week my friend, Mary and I got enough people to donate that we were able to win a $1,000 for sarcoma from facebook. This did not come from those who donated. This was beyond the amounts that were donated. Essentially, it's not the amount of money you donate. It is the number of people who donate.
This week, an anonymous donor (some rich guy) is going to match our donations dollar for dollar. Plus, we can win another $1,000 from Facebook. If you do this before 12 noon on Sunday, Pacific Time Zone. That means by 9 am East coast time.
If you are wondering what is Facebook? ask any geeky friend, or your teenage or college age kids. They can probably tell you better than I.
As I said earlier, there is this little catch. In order to make a donation, signing up for a Facebook account is required. Now, don't worry about that. I have a Facebook account, so do my grown kids. It's free and no one is going to scam you.
You just sign up for Facebook,
then go to
http://apps.facebook.com/causes/view_cause/52656
and make the donation.
This is my facebook page. I'd love it if you want to add me as your friend.
http://www.facebook.com/profile.php?id=571330048
I realize that you may already have MySpace or some other friend network, as I do, but this needs to be done through Facebook. If we are able to get enough donors, we can qualify for a $25,000 prize. There is a prize for 50,000 but I doubt we have enough people interested in Sarcoma to make that prize.
I have to tell you, this whole thing has me very excited and happy. For once in my life I can make a difference. I was devastated when I was first diagnosed and during the times I had all those recurrences, I was pretty scared. And saddened because the doctor told me there was no cure, just by chance if someone were amputated early could they survive. Here it is forty years later. So many other cancers are now curable and new research is going on, while Sarcomas are sitting there stagnant. When a child gets sarcoma, their chances of survival are even more slim than an adults.
Maybe I should be grateful that I survived. I am. But, because I run an online group for other Chondrosarcoma patients, I get very sad when they die. I sure would like to see that stop happening.
Well, I hope I haven't written too much. I really want you to do this. If you have every been glad I am alive. If there has ever been anything I have done for you that you have liked, that you have wanted to thank me for, this is a very concrete way to do it.
If you are really enthusiastic about this, I would appreciate it so much if you will let your family and friends know about this, too.
If you do not want to hear anything further from me about this, please let me know.
Thank You,
Elizabeth
Those who are making every effort to save their lives by undergoing chemotherapy often find themselves without hair. I am only too aware of how many people go through this, both men and women.
