Some of you that are either Facebook friends with me or know me on the Playa form know already but those that dont.. I have a extremely rare cancer like disease that is uncureable and I've been fighting it for the past 7 months. I actully got sick the day before we headed to Playa ( and Cancun) and was sick the whole trip, came home and went to the ER twice then went to my Dr's when she opened and I don't remember much more. She called 911 and I was taken in a ambulance to the hosptial and admitted where I had a biopsy on my lungs and while I was under they used a camera to see what was wrong with my heart ( which also came up in test). I have LCH there is no cure. I did one round of 168 hours of chemo and looking at more soon. I am on a lot of meds and have lost 15.8% of my weight ( over 55 pounds). But hey I am not overweight anymore. I would not recomand this diet to anyone though LOL I went from over 220 pounds to 160's with I bet 30 plus Pounds on top LOL Wish I could lose THAT ROFL! well Ok not all it but some it! .I am unable to eat more then 8 or so bites a day ( which is GREAT) as two weeks ago I was eatting 4 or so bites for last almsot 7 months. I hurt every inch of me and there is something wrong with my stomach. Were not sure if it's the LCH or if its Endo Or if its a Ulcer we just don't know but I get admitted today and put under for a biopsy on my stomach. Unfortunally LCH ( the Rare disease ) does not always show up on a biopsy. Less then 3000 have ever had this disease and most are small children. We have went to Mayo and I get treatment at home with what seems like 10000 Dr's ( ok ok It's Home Care, A oncolgist, A lung Dr, A internal health Dr , PT at Home etc etc) but it seems like so much more as I'm always at the Dr or always have someone in my home treating me. I don't know why I've not shared here. I know my husband did make Steve aware since were buddies but I guess I just feel so wore out. I do keep my friends up to date on my facebook and on playa forum but I feel bad that I've not posted here . shame on me! It's scary some days I do Ok as in I can get out of bed and maybe go to a store and shop for 10 minutes. Some days I can take a hour car drive ( as we did this week to see the lights) but I don't have to physically do anything but sit in the car . We did manage the movies also ( a big step!) but again physically I just had to sit up which is a big task at times. I don't remember much of the vacation unfortunally. I do love looking at the pics the kids took! Who knew buying 5 children nice digital cameras would come in handy ! ( That was their surprise for Vacation). I don't know how I manage some days being a mom of six but we do manage every day. I was on the news the day before Thanksgiving and again a week or so ago. The disease is just so rare and with no cure were trying to get the word out. I WANT TO LIVE A LONG LIFE. WE NEED TO FIND A CURE. WE may look into doing a stem cells transplant but were not sure if I'd be able to manage it. We are looking into it though. It would be VERY risky. Heck getting a cold is risky right now. I guess I am rambling on. I just want prayers please. Prayers that today goes ok. Although a Stomach biposy does not seem like a big deal to some it is for me expecially being put all the way under with my lungs the way they are right now. It is also in my lymp nodes under my arms ( it was the size of a golf ball) However the Chemo Shrunk them! YAY!. I know not everyone believes in God and I'm totally Ok with that so those that don't if you could just give us good thoughts I'd appericate it. Those that believe in prayers I'd apperciate that! We did do a healing service at my church I guess 8 or so days ago. Still waiting for that Miracle. Thanks in Advance Trina
Trina, we have never met, but your story touched me so. We wish you the best and so admire your sense of humor in the face of adversity. You are a very courageous soul and our thoughts and prayers are with you. Hang tough, you have many friends and admirers you have never met.
rdubnpk We are so sorry to hear about your illness. This is the time of year for miracles and we are hoping for one for you!!!
Although we have never met, we will keep you in our thoughts and prayers, keep positive and strong. Thinking of you and your family. xxx Sue and Dave
we have never met you either, but your post had us both in tears. My mum has incurable lupus which is radically impacting on her lifespan and quality of life, but your condition sounds truly awful. Although we are not prayer type people please do know that we wish you all the very best and you are in our hearts and thoughts. The Temptation community (we are finding) is a wonderful friendly support group in every way. Take care Tony and Deb
Though we have never met, I've read your previous posts and I am aware of who you are. I'm so sorry to hear that you are having such a tough time of it, you and your family. Please know that I'm thinking of you and praying that all will go well for you and yours. Keep us posted on how your doing.
Wishing you all the very best Catrina, also to Skip and the kids too. If there's one thing I do know of you it's that you are a fighter and you wont let this thing beat you without one hell of a fight. We really enjoyed the day we met up with you and your family last summer in Cancun and hope we have the chance to do it again some day.
May we send our healing wishes to you, I know that we have never met but you sound like an amazing woman, you will be included in our prayers. Jackie and Jim
Our thoughts and prayers are with you and especially those children. Keep up the fight and hold on to that positive attitude. Dale and Cherri
