PreLymphoma, Bone Marrow Test On Thursday, Sept. 25th...

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Permalink Reply by Sweetlife on September 23, 2008 at 8:03am

Hello Leslie....
Wow! I do somewhat know theplace you are in right now & it is rough! I have breast canSer, but I can still relate to the terror & to being soooo done with all the doctors and tests! Also can relate to children (mine are almost 18, and 16) who don't seem to care. It is all so hard to deal with.

First of all I would just say that I always recomend at least 2 doctors (specialists) opinions before doing much of anything.

Beyond that I would continue getting support on CSL, but also build a "real life" support system....find a support group (I tried 1 that was really awful for me and then gave a different one a try and have been going foryears and love it!) Educate yourself about your condition as much as possible.....I sound just like Kris' books! You know the deal! I do not have info about your condition, but I know you can handle it....and you don't have to handle it alone either.

We're with you!

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Permalink Reply by Leslie on September 24, 2008 at 10:08pm

Thanks Sweetlife...You are right about educating oneself... I just know with me "A little knowledge is dangerous" or overwhelming sometimes.. But I know about advocating & educating.. Thank you though for your input...

Yes It all can be soo hard...

What about you, How Are You Feeling?? I'm so glad that you found a Support Group, that does in fact "Support".. (smile)... I'm a BIG BELIEVER IN SUPPORT............ I have recently also joined a Support Group for Fibromyalgia which I also have... In fact last week was the first actual group I went to... I met some interesting people and found out things about this illness that I NEVER EVEN KNEW and I have had it FOR YEARS... I'm like a Sponge when it comes to learning new things and old for that matter.. especially since i have major CRS... So sometimes it's like learning it for the First Time... UGH!!!!!!!!!!!

I found out from an aquantaince that has Lukemia, do bring Two Pillows Tomorrow... One For My Back & One For My BUTT!!!!!!!!!!!!!!! Since afterwards it can be extremly uncomfortable... She actually was also very surprised that they are allowing me to drive afterwards... HMMMM, nobody mentioned ANYTHING about that to me....

Thank you again FOR ALL OF YOUR KIND WORDS & SUPPORT.......

Be Well!!!!
xoxxox Leslie

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Permalink Reply by Caroline on September 23, 2008 at 8:10am

Hi Leslie

I too am so done with doctors and tests (as I sit here and wait for yet another pathology report). Sometimes I think doctors make up names 'prelymphoma' hmmm... and it means??? C'mon give me a definition here.

Its time for you to focus on number one - that would be you. Find people who can understand - here on CSL but also in your non-virtual life. Find a support group, a therapist, church, a bunch of people to do tai chi with - whatever it takes for you to feel better and feel supported. Find people who can understand and help you understand you and your needs.

In the meantime, hang in there and take it one day at a time. Good luck and a big fat {{HUG}} to you.

Caroline

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Permalink Reply by Leslie on September 24, 2008 at 10:22pm

Thank You Caroline..

Yes I Do Agree with the fact that Doctors/Medical Journals do invent these obscure names for various things... It AMAZES ME...

I actually found out from my dermatologist yesterday, what my actual Diagnosis is @ this time, Although it seems to constantly be changing... Who knows after tomorrow's Bone Marrow Test, they may find out it is something TOTALLY DIFFERENT!!!!!!!!!! At this time it is: "Cutaneous T-Cell Lymphoma".

I agree & am a full believer in Therapists & yes I do see one but I found my greatest Support has been on this wonderful Crazy Website, With All Of You Rockin Crazy Sexy Cowgirls, (SMILE).......

Thank You & Big Squishy Long Hugs Back At You... (wink)..

I will keep you all posted as soon as I know what they come up with after tomorrow... UGH!!

Have a Wonderful Evening...
xoxxo Leslie

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Permalink Reply by Adria on September 24, 2008 at 12:06am

Hi Carrie-
Just checking in wondering how your scans went? Did you get any new helpful information? My thoughts are with you on this journey of tests and more tests-
Namaste-
Adria

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Permalink Reply by Leslie on September 24, 2008 at 10:30pm

Hi Adria,

I think you may have gotten me confused with Carrie, although your response was appropriate to my situation. (wink)... So excuse me up front if you were in fact intending this to go to Carrie as I am going to respond to your sentiments...

My Scans went AWESOME, thank you very much for asking... Nothing showed in those areas..
Tomorrow I am having a Bone Marrow Test and depending on what that shows is the course that will be taken next... At least with this one Condition going on in this Interesting Complicated Bod Of Mine.. (smile)... The Dermatologist & Oncologist @ this point are confident that all that will need to be done is a continuous watch and periodic visits with them both to check on me. Other then that.... I can now move on with my life, deal with my other health issues which actually I have been dealing with simultaneously with this, joining other support groups both Online & In the Outside world and beginning to change the way I identify with myself, instead of Leslie with the ..... It is starting to be Leslie with the Job interview arranged, Leslie the Mentor, which I will be starting my first training for this Sat., Leslie the "Survivor Thriver" I think to Quote Kris (Smile, Wink) and Leslie the "Warrior".. LOL... And of course I am beginning to do my Yoga @ home again, little by little and trying to work through my Fibro pain...
Be Well.........Leslie

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Permalink Reply by Bren from Rivendell on September 24, 2008 at 10:33pm

Hi sweets, remember to hold my hand and concentrate on the stargazer lilies...I'm there with you...always...b

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Permalink Reply by Leslie on September 28, 2008 at 6:47am

Thank You Bren... I did see all of those Stargazer Lilies and smelled them as well,,. mmmmm (smile).. It is so heartwarming to know tht yu care..... Your good thoughts/prayers & support have meant soooo much to me. MUAH!!!!!!!!!!

Hope your doing ok, I want you to know you as well "Are NOT ALONE" We are/I am here for you in whatever way you need it, (well obviously within reason, since I cannot not(at least) just hop on a plane to be with you, although it would be nice... Just ask what it is you need emotionally & I'm sure someone here can provide you... Keep Reachin Out & "KEEP ON TRUCKIN ON".. (Wink)..

Hope your enjoying your weekend..
xxoxox Leslie

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Permalink Reply by Debbie on September 24, 2008 at 10:55pm

Hey girl
Just make sure they drug you up before the BMB, it does go fast, I won't lie, it's not fun, but it is quick.
We have to do this shit, it is part of the deal. freak out, let all your crazies out, blow off steam, cry and wail.. I did.. then, shift into making peace with it all, peace with your body, do not fight yourself.. sounds crazy but it is the one focus that helped me the most till I found Kris and all the rest.
Prayers for a good result for you and a clear diagnosis
deb

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Permalink Reply by Leslie on September 28, 2008 at 6:56am

Hey,

Well actually, I read somewhere, Prior to the test that one does better if somewhat tranquilized, which of course NOBODY in the Dr's office tld me... so I went to my Psychiatrist who supplies me with my Anti-Depressants and asked her for a script for 4 Xanax... This anti-anxiety has seemed to help me over the years... I took one the night before to try and relax and sleep and then one under the tongue (YUCK) (works faster and goes quicker into the bloodstream.....was actually Foaming @ the Mouth when I arrived "AHHHH MAD DOG"""" Ha.... It did go fast but unfortunatly for me, since @ this time, I am sooo extremly overweight (OK, TOPIC FOR ANOTHER TIME, BEING ON DIFFERENT MEDS FOR DIFFERENT THINGS F---IN SUCKS) he needed to use the "Bigger/Thicker" needle... Of course this was not determined until AFTER he stuck me & dug around for a few times.. D-A-M-N........ NOW THAT HURT...

I actually asked when it was over if I could take a picture of it... Of Course he thought I was Crazy, which of course I AM, as I am/We All Are Members of this "Crazy Sexy Life"...... It was wild looking... I told him tht i am not familar with this type of test nor do I know what to look for, but by the looks of that, it looks like he got "A REALLY good, big sample) he laughed and yelled out into the hallway what I said, and they all laughed @ which he replied I was correct..

Thank you for your good wishes & prayers.
xoxoxo Leslie

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Permalink Reply by Sherry on September 24, 2008 at 11:07pm

Leslie, I'm sorry for all the tests and stress - I think its pretty much the worst part. When I was first diagnosed with mcl, i was in denial, I was scared, and I was screaming mad too. Your world is rocked and you reel - its normal but it sucks. Try hard to keep positive thoughts and like Deb said, the bmb is not easy, but we've all gotten through it. We are here for you and praying for the best possible results. Big hugs to you - hang in there xoxo

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Permalink Reply by Leslie on September 28, 2008 at 7:00am

Dear Sherry,

Thank you for sharing some of your story & for your good thoughts & prayers.

Yes IT HURT, but it was quick and now I FINALLY FEEL LIKE I CAN MOVE FORWARD IN MY LIFE...I already started by taking the Mentoring Training yesterday... I'm tired (as I mentioned in another discussion, i THINK, DUH) of identifying myself as being Sick, and with all these diagnosis's and illnesses.. I am truly thinking Positive and feeling like this BMB is just another procedure and it will come back fine... @ this present time All that is needed is continuous visits to the Oncologist & Dermatologist and we all are taking a "watch & see" attitude..

Hope you are well and enjoying your weekend.
xoxoxo Leslie

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