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e-CJ — One Purple Tulip for Alex

Published: 2008-04-28 06:30:35 +0000 UTC; Views: 1739; Favourites: 37; Downloads: 0
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Description Purple is the color for Leiomyosarcoma support. That is why there is a purple ribbon behind the dragon in my support stamp. I have just one purple tulip that bloomed in my garden this year and I have been watching it over the last week or so to catch it at the peak of its bloom so that I could try to photograph it. Today was the day and I actually went outside in the rain to get this.

Though I think I might have done better with the background, I didn't want to cut it to improve the composition. So unless I get something better tomorrow and replace it, this is the one.

This tulip is a special gift for a special friend. When mentioned that he has liked tulips since his childhood in France, I knew that this tulip belonged to him. He lives in Sydney, Australia now and just found out a few weeks ago that he has Leiomyosarcoma. So now we are buddies in the same boat, except his side of the boat includes active chemotherapy and learning all about LMS and what that really means, including the hard stuff that I had to face myself two years ago. I remember those early days and how much I appreciated the support of the others that came before me.

The one really great thing to have when you learn you have a rare and incurable disease is a friend that has been there too. Without the Internet, neither of us would have that. It is only because of this huge interweb of people that the few hundred or thousand people in the entire world with this disease have been able to find one another. Of the millions of other people on dA, Alex is the only other one I know of with this same rare cancer. To say he means a lot to me is an understatement.

Alex, this one is for you. LMS purple. It is sad we had to meet this way, but I am glad we have each other.
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Comments: 37

yokopoko [2008-07-13 10:06:09 +0000 UTC]


Hello! This is a random message to let you know that this work has been featured in my news article 50 Violet Flowers vol. III .
If you want me to remove your work from the article, just send me a note.
And support would be truly welcome, if you want to say 'thank you', do it in news comment or just the article.
Hope you'll enjoy the feature.
Have a nice week!
=yokopoko

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e-CJ In reply to yokopoko [2008-07-14 23:37:05 +0000 UTC]

Thank you very much. What an awesome series!

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Aurorephoenix [2008-06-03 09:48:25 +0000 UTC]

Beautifull*____
I love those flowers and your picture shows the tulip very good.

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e-CJ In reply to Aurorephoenix [2008-06-03 10:09:58 +0000 UTC]

Thanks. I really love tulips! Thank you for ing it.

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WinDrift [2008-05-02 00:19:25 +0000 UTC]

I am so sorry about both situations, but it sounds like you are both fighters and winners! Such a lovely photo and gift!!

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e-CJ In reply to WinDrift [2008-05-02 07:38:51 +0000 UTC]

Aww, thank you, Loretta. We both fight it with all we've got.

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WinDrift In reply to e-CJ [2008-05-05 22:18:36 +0000 UTC]

I have a tiny tiny idea of what you face as I have MS, and fight and keep a good attitude is about all you can do. You have a wonderful and stong outlook that is so good

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e-CJ In reply to WinDrift [2008-05-05 23:16:08 +0000 UTC]

Thank you, Loretta. I guess you do know. I also understand what you are going through because Fibromyalgia often mimics MS, though I do not believe it ever progresses as far. Good luck with your own battle, my friend.

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WinDrift In reply to e-CJ [2008-05-06 00:27:46 +0000 UTC]

thank you for your good wishes, "they" whom I try to not to listen to often ...say if you have one auto ammune disease then by some high percentage you will also get another one. My Doctor trys to convince me I have both MS and Fibromyalgia, so far I have igonored him. I live in a small town and they really do not know much about either. What I have learned is my own research and solutions are very often the best. They would have me very very ill on chemo if I followed their advice. NOT me thank you very much...

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e-CJ In reply to WinDrift [2008-05-06 00:52:56 +0000 UTC]

I suppose "they" could be right. I have more than one autoimmune disease if FMS is autoimmune. Looking on the bright side, I have often wondered if my remission from the Leiomyosarcoma didn't have something to do with my having an overactive immune system. It is a very aggressive kind of cancer in a lot of people who have it, so I wonder why my little ditzels and thing-ums keep going away spontaneously.

On another note, there are now a lot of new chemotherapy treatments that are targeted to a specific disease and do not create a systemic effect so they do not make people ill like systemic chemotherapy does. One example is methotrexate which is used for Rheumatoid Arthritis. There are others as well, though I do not know if there are any specific to MS. Just the same, I think it is something that we can find some hope and promise in.

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WinDrift In reply to e-CJ [2008-05-06 01:00:38 +0000 UTC]

oh I agree it does have its place, my mother was in her late 80's when she got Lymhpoma, she did well and lived to 96, she did not have cancer then. It is just that they have not proved that MS is and over or underactive immune system. I took shots for three years and got by, they cost over 1.000 a month. Now I take one pill that regulates your immune system and I am doing very very well and they cost 30 a month. That is why they will not do studies on it. They can not make money. I just hope your thing-ums and ditzels keep going away

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e-CJ In reply to WinDrift [2008-05-06 06:04:30 +0000 UTC]

What is it that you take? That is a very sad statement of our health care system, isn't it? That is where being able to do our own research on the internet is really helpful too. I agree with you that there are probably a lot of safer and lower cost medicines that work as good or better than some of the dangerous new "designer" treatments.

I suspended chemotherapy after four of what was supposed to be sixteen treatments. It was so toxic I don't think I would have survived much more. The total cost of what I did have was nearly $80,000.00. I hope that I never need systemic chemotherapy again. I sure do not regret suspending those treatments, even if it does mean that the cancer comes back. It took a very long time to "recover" from the treatments I did have. Actually I might never recover completely.

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WinDrift In reply to e-CJ [2008-05-06 20:31:12 +0000 UTC]

I am on LDN or Low Dose Naltrexone, it was originaly for addictions in a 55 Milagram doses and that has side effects. But the low dose does not.
[link] check out this site and if you have the time do some serches on it because they use it for so many things, includeing Fybromyalgia.

I pray that you will never need Chemo agian. Best of health!! Loretta

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e-CJ In reply to WinDrift [2008-05-07 20:13:40 +0000 UTC]

Wow, thank you for sharing that article, Loretta. I sort of gave up on treating the fibromyalgia and arthritis a few years ago because the drugs they gave me messed up my head so much. Of course, everything else seems to take a back seat to cancer now. It's kind of the motherlode, you know? It is really hard to have anything else that is really serious with fibromyalgia though. You never know when the pain you are feeling is from something more seriously threatening that fibro. It is by a small miracle that I am even alive now. Well, that is a long story for another place & time. I have thought about looking into new treatment for the fibro though, it would be nice to have a little relief from all this stupid pain. Maybe you have given me the key here. Thanks so much!

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WinDrift In reply to e-CJ [2008-05-07 21:50:11 +0000 UTC]

oh I hope so! I can honestly say I have no idea how bad I would be now without it. At two points I was in a wheelchair. But I have been doing nothing but getting better not just maintaining. So please consider looking into it. Loretta

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e-CJ In reply to WinDrift [2008-05-08 06:56:42 +0000 UTC]

I will. How wonderful that you are getting better and better. Especially being able to walk. I dread the thought that might happen one day.

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WinDrift In reply to e-CJ [2008-05-09 21:22:03 +0000 UTC]

Keep your thoughts in the overcoming and positive mode The power of the mind is unexplained!

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e-CJ In reply to WinDrift [2008-05-10 05:33:12 +0000 UTC]

Absolutely. That is something I believe is essential to my well being.

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WinDrift In reply to e-CJ [2008-05-13 11:58:01 +0000 UTC]

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1001G [2008-04-29 13:42:04 +0000 UTC]

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route64 [2008-04-29 07:49:47 +0000 UTC]

Carole,

I am honored to have this tulip and I'm glad you didn't cut it for the photo, flowers are best taken alive...

We've obviously drawn the shortest straw but we've got each other, thanks to the internet, It's great to know that you are there for me and vice versa whenever it is needed.

Thanks again for picking the purple one !

Take care,

Alex

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e-CJ In reply to route64 [2008-04-29 09:05:52 +0000 UTC]

Hi Alex,

I don't really think we have drawn the shortest straw. There are a lot of shorter ones out there, but ours certainly aren't very long either, are they?

It makes me happy that you like the purple tulip.

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Blueskye27 [2008-04-28 23:16:14 +0000 UTC]

This is beautiful, CJ. I'm just so sorry that you and Alex found each other this way.

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e-CJ In reply to Blueskye27 [2008-04-28 23:33:27 +0000 UTC]

Thank you, Cindy. The nice thing is that we were able to find each other.

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Blueskye27 In reply to e-CJ [2008-04-28 23:35:23 +0000 UTC]

Yes, what were the chances?

Still having fun and good days?

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e-CJ In reply to Blueskye27 [2008-04-29 01:46:57 +0000 UTC]

Slim and none with the odds on none. Really!

Good and fun as much as good and fun are possible. Thank you for asking, sweetie...

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Blueskye27 In reply to e-CJ [2008-04-29 01:54:51 +0000 UTC]

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e-CJ In reply to Blueskye27 [2008-04-29 03:06:34 +0000 UTC]

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dbestarchitect [2008-04-28 14:13:54 +0000 UTC]

Very pretty!

So what about the bet on the pink one? My bet was that it'd be #5 by today.

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e-CJ In reply to dbestarchitect [2008-04-29 01:55:57 +0000 UTC]

Sorry, hon, it only made it to 24.

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dbestarchitect In reply to e-CJ [2008-04-29 02:30:25 +0000 UTC]



I guess that's a journal feature from me

good bet

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e-CJ In reply to dbestarchitect [2008-04-29 07:09:48 +0000 UTC]

Thanks for the intermission...

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dbestarchitect In reply to e-CJ [2008-04-29 13:55:02 +0000 UTC]

welcome

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Annaphotix [2008-04-28 07:09:59 +0000 UTC]

Stunning - the background isn't in the least bit distracting, its ok. Lovely shot!

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e-CJ In reply to Annaphotix [2008-04-28 07:32:04 +0000 UTC]

Thank you, Anna. I still think it could have been better, but I am not willing to cut the only purple tulip in the garden. Thanks for ing it. I sure appreciate it.

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inObrAS [2008-04-28 06:53:16 +0000 UTC]

Amazing work!

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e-CJ In reply to inObrAS [2008-04-28 07:32:29 +0000 UTC]

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