Back from tests for now

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Question:

Oh Kili I feel sooooo bad for you! I just don’t know what to say. {{{{{{{Kili}}}}}}} Love, Di

Thanks, Di. I’m a little depressed, but I have to go through it. I don’t have much of a choice. It’s going to be a long road to recuperation. I’ll keep you guys posted. kili — The charter is available at: http://readystump.algebra.com/~asapm

Response:

- Hide quoted text — Show quoted text – Well, I’m back from the Mayo Clinic for the first round of tests. Sheesh, what an ordeal! I have to go back next week to duplicate many I’ve already had done (they want to be SURE) and add on a few more. (I’ve already had a CT scan, a bone scan, an MRI, an ultrasound and a chest X-Ray.) Basically, the oncologists, radiologists, surgeons and specialists I’ve seen tell me that they’ve never run across a case like mine and it’s going to take some radical surgery to get my tumor out. The tumor is wrapped up in the connective tissue between my ribs and is almost reaching my heart. Because it’s almost to my heart and lungs, they do not want to have me go through radiation for fear that radiation could damage my heart and lungs. What they’re thinking they may do (but they’re still conferring and they’ll know more after more tests next week) is that they will remove my sternum, three ribs, my left breast and the muscle on my left chest side. Since that would leave me with a rather large hole in my chest that would expose my heart, they want to remove my lower two abdominal muscles from the "6-pack", place a strip of surgical gauze over the gap, and lay the removed muscles over the gauze. It’s totally scary, but there isn’t another alternative at this time. So, yeah, it sucks. It really sucks, but I thought I’d let you guys know. On a good note, my anxiety was so bad at the clinic that they couldn’t tap my veins because I was shaking so badly. They put me on Xanax, which seems to help – at least I was able to sleep last night. kili ((((((((((((kili)))))))))))) <these are very gentle hugs, btw You just may be the bravest person I know. I hope I get to meet you some day to tell that to your face. I’ll even waggle my dentures at you so you’ll know it’s me. Thank you for including us in your life. You inspire me to keep on keeping on when things look scary. Deirdre

I’d love to meet you, too. I think what you’re going through is just about as bad as what I am! How we manage with all of our fears, I will never know. kili — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Geez, Kili… it sucks to be the "unique case" with something like this. That’s an awful lot of surgery, but if it gives you your life from cancer, it will be well worth it. I’m glad you are seeing the experts. Keep taking meds to help with your anxiety. You surely deserve all the calm you can buy for yourself right now. ((((((((Kili))))))) Praying for you…. xxoo Anne

Thanks, Anne. I need all the encouragement I can get right now. All this terrifies me. kili — The charter is available at: http://readystump.algebra.com/~asapm

Response:

((((((Kili)))))) Tony – Hide quoted text — Show quoted text – Well, I’m back from the Mayo Clinic for the first round of tests. Sheesh, what an ordeal! I have to go back next week to duplicate many I’ve already had done (they want to be SURE) and add on a few more. (I’ve already had a CT scan, a bone scan, an MRI, an ultrasound and a chest X-Ray.) Basically, the oncologists, radiologists, surgeons and specialists I’ve seen tell me that they’ve never run across a case like mine and it’s going to take some radical surgery to get my tumor out. The tumor is wrapped up in the connective tissue between my ribs and is almost reaching my heart. Because it’s almost to my heart and lungs, they do not want to have me go through radiation for fear that radiation could damage my heart and lungs. What they’re thinking they may do (but they’re still conferring and they’ll know more after more tests next week) is that they will remove my sternum, three ribs, my left breast and the muscle on my left chest side. Since that would leave me with a rather large hole in my chest that would expose my heart, they want to remove my lower two abdominal muscles from the "6-pack", place a strip of surgical gauze over the gap, and lay the removed muscles over the gauze. It’s totally scary, but there isn’t another alternative at this time. So, yeah, it sucks. It really sucks, but I thought I’d let you guys know. On a good note, my anxiety was so bad at the clinic that they couldn’t tap my veins because I was shaking so badly. They put me on Xanax, which seems to help – at least I was able to sleep last night. kili

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

– Hide quoted text — Show quoted text – Well, I’m back from the Mayo Clinic for the first round of tests. Sheesh, what an ordeal! I have to go back next week to duplicate many I’ve already had done (they want to be SURE) and add on a few more. (I’ve already had a CT scan, a bone scan, an MRI, an ultrasound and a chest X-Ray.) Basically, the oncologists, radiologists, surgeons and specialists I’ve seen tell me that they’ve never run across a case like mine and it’s going to take some radical surgery to get my tumor out. The tumor is wrapped up in the connective tissue between my ribs and is almost reaching my heart. Because it’s almost to my heart and lungs, they do not want to have me go through radiation for fear that radiation could damage my heart and lungs. What they’re thinking they may do (but they’re still conferring and they’ll know more after more tests next week) is that they will remove my sternum, three ribs, my left breast and the muscle on my left chest side. Since that would leave me with a rather large hole in my chest that would expose my heart, they want to remove my lower two abdominal muscles from the "6-pack", place a strip of surgical gauze over the gap, and lay the removed muscles over the gauze. It’s totally scary, but there isn’t another alternative at this time. So, yeah, it sucks. It really sucks, but I thought I’d let you guys know. On a good note, my anxiety was so bad at the clinic that they couldn’t tap my veins because I was shaking so badly. They put me on Xanax, which seems to help – at least I was able to sleep last night. kili —

Kili, I’m so sorry. You are very, very brave. I admire your ability to deal with this. You’re, as always, in my thoughts and prayers. (((((((((((((((((Kili)))))))))))))))))))) Love, Dawn — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Hi Kilikini: Thanx for the update. Amazing what modern medicine can do today, isn’t it. Sorry you have to go thru this but the alternative isn’t an option, as you indicated. You have my prayers and sending vibes of strength. -frizz — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Thanks, Frizzie. kili — The charter is available at: http://readystump.algebra.com/~asapm

Response:

I’m really depressed, to put it bluntly. My husband has been so good and says he doesn’t care, but I start crying. I am going to feel hideously disfigured and ugly. Kili, please ask the hospital social worker to refer you to a support group or network, or to someone on staff who counsels cancer patients. You are NOT alone in your horror of what is to come, and I’m sure there are people who have been through major surgery like this who could reassure you and share their stories. xxoo Anne

That’s not a bad idea, Anne. I never thought of that. I’ll look into it, thank you! kili — The charter is available at: http://readystump.algebra.com/~asapm

Response:

I’m really depressed, to put it bluntly. My husband has been so good and says he doesn’t care, but I start crying. I am going to feel hideously disfigured and ugly.

Kili, please ask the hospital social worker to refer you to a support group or network, or to someone on staff who counsels cancer patients. You are NOT alone in your horror of what is to come, and I’m sure there are people who have been through major surgery like this who could reassure you and share their stories. xxoo Anne — The charter is available at: http://readystump.algebra.com/~asapm

Response:

((((Kili)))) Your bravery is an inspiration! I wish you well! Sending lots of positive thoughts and energy your way!! MikeH Thank you, but you’re making me out to be braver than I am! I’m scared sh*tless!

Bravery is being scared shitless and doing it anyway. It doesn’t take any courage to do the easy stuff. — David Chamberlain – ASAPM Moderator | Support for anxiety or panic disorders. Check us out! | | alt.support.anxiety-panic.moderated http://stump.algebra.com/~asapm | — The charter is available at: http://readystump.algebra.com/~asapm

Response:

- Hide quoted text — Show quoted text – <gently snipped It’s totally scary, but there isn’t another alternative at this time. So, yeah, it sucks. It really sucks, but I thought I’d let you guys know. On a good note, my anxiety was so bad at the clinic that they couldn’t tap my veins because I was shaking so badly. They put me on Xanax, which seems to help – at least I was able to sleep last night. Dear Kili, I truly don’t know how you do it! I am such a chicken when it comes to anything ‘medical’. I admire your courage and strength. Just remember that it is okay to be scared. Anyone would be in your shoes. Keeping my fingers crossed that Mayo takes really good care of you. (((((Kili)))))

Thanks, Jackie! kili — The charter is available at: http://readystump.algebra.com/~asapm

Response:

((((Kili)))) Your bravery is an inspiration! I wish you well! Sending lots of positive thoughts and energy your way!! MikeH

Thank you, but you’re making me out to be braver than I am! I’m scared sh*tless! kili — The charter is available at: http://readystump.algebra.com/~asapm

Response:

<gently snipped ::It’s totally scary, but there isn’t another alternative at this time. So, ::yeah, it sucks. It really sucks, but I thought I’d let you guys know. On a ::good note, my anxiety was so bad at the clinic that they couldn’t tap my ::veins because I was shaking so badly. They put me on Xanax, which seems to ::help – at least I was able to sleep last night. Dear Kili, I truly don’t know how you do it! I am such a chicken when it comes to anything ‘medical’. I admire your courage and strength. Just remember that it is okay to be scared. Anyone would be in your shoes. Keeping my fingers crossed that Mayo takes really good care of you. (((((Kili))))) Jackie ~*~No matter where you go or what you do, you live your entire life within the confines of your head~*~ — The charter is available at: http://readystump.algebra.com/~asapm

Response:

((((Kili)))) Your bravery is an inspiration! I wish you well! Sending lots of positive thoughts and energy your way!! MikeH

. — The charter is available at: http://readystump.algebra.com/~asapm

Response:

- Hide quoted text — Show quoted text – Well, I’m back from the Mayo Clinic for the first round of tests. Sheesh, what an ordeal! I have to go back next week to duplicate many I’ve already had done (they want to be SURE) and add on a few more. (I’ve already had a CT scan, a bone scan, an MRI, an ultrasound and a chest X-Ray.) {{ Kili}} The more you learn, the more you know. I know this is scary and awful and is very much like going into a long, dark, winding tunnel with no light visible at the end. That would be enough to flatten anyone’s spirits, even without pre-existing anxiety disorder. Duplicate testing not only gives the Mayo staff time, experience, and knowledge, it also serves to allow you the same. Time to search online, time to learn as much as you can about this rare beast. Realistically, your illness is so rare that the caregivers will be reading the same online articles you can access. Read, research, bring yourself to treatment as a partner IN treatment, with questions. Print out what you find and ask if they’ve read this or that. As you go thru this ordeal, remember, you do have a voice. Nothing is written in stone. Perhaps you don’t feel that way right now, but you CAN and WILL become involved in the possibilities and choices available. Give them a run for their money. Feeling like a lab rodent is not obligatory, you can refuse to take that "label" by arming yourself with the best available information. Doc’s don’t get involved with the payment info, so separate your spirit from being a "charity case". You are a wonderful human spirit going through an undescribably difficult time. Sue

Sue, what a wonderfully kind thing to say. Thank you. I have been feeling like their guinea pig and maybe I’m looking at it the wrong way, but it’s all so new and frightening to me. I’ve never been stuck with a needle before this and I’ve been stuck more times than I can count already. Now next week is more of the same. Sigh. I will get through this because I have no choice. I appreciate your uplifting post. kili — The charter is available at: http://readystump.algebra.com/~asapm

Response:

{{ Kili}} The more you learn, the more you know. I know this is scary and awful and is very much like going into a long, dark, winding tunnel with no light visible at the end. That would be enough to flatten anyone’s spirits, even without pre-existing anxiety disorder. Duplicate testing not only gives the Mayo staff time, experience, and knowledge, it also serves to allow you the same. Time to search online, time to learn as much as you can about this rare beast. Realistically, your illness is so rare that the caregivers will be reading the same online articles you can access. Read, research, bring yourself to treatment as a partner IN treatment, with questions. Print out what you find and ask if they’ve read this or that. As you go thru this ordeal, remember, you do have a voice. Nothing is written in stone. Perhaps you don’t feel that way right now, but you CAN and WILL become involved in the possibilities and choices available. Give them a run for their money. Feeling like a lab rodent is not obligatory, you can refuse to take that "label" by arming yourself with the best available information. Doc’s don’t get involved with the payment info, so separate your spirit from being a "charity case". You are a wonderful human spirit going through an undescribably difficult time. Sue — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Hi Kili, It sound scary all these things, but like you said, not much choice. I hope everything goes well for you. We seem to be manage to get enough strength to do what we have to do, even when we don’t want to. Sounds like you are getting good medical care. My very best wishes to you Kili. Mary

Thanks, Mary, truth is I am getting the very best medical care possible AND it’s *paid* for because they’re using me as a guinea pig – so all my medical bills are covered. They gave me a grant due to the rareness of my illness. Can’t beat that. kili — The charter is available at: http://readystump.algebra.com/~asapm

Response:

((((((((((((kili)))))))))))) <these are very gentle hugs, btw You just may be the bravest person I know. I hope I get to meet you some day to tell that to your face. I’ll even waggle my dentures at you so you’ll know it’s me. Thank you for including us in your life. You inspire me to keep on keeping on when things look scary. Deirdre — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Hi, Kili, Wow, you’ve been through a lot and I admire your strength. How are you feeling over all of this being done? I hope and pray they get the tumor removed soon so you can start the healing process and put this behind you. ((((((Kili)))))) smiles, Elise

Thanks, Elise. How do I feel over all this being done? Honestly, I’m really upset. I will only have one breast and I can not get a prosthesis. If I could get an implant, I wouldn’t care as much, but implants go under the muscle and rest on the ribcage – I won’t have a ribcage. Secondly, since I will have no ribcage, there will be nothing there to protect my heart and lungs. A blow to my chest can kill me. I’m dreading this, I’m scared, I’ll have a zipper scar from above my *breast* down around to the bottom of where it should be. I will no longer be able to wear a scoop neck shirt, an open neck blouse or a bathing suit without eyes staring at me – not that I go anywhere now, but, you know, what if. I’m really depressed, to put it bluntly. My husband has been so good and says he doesn’t care, but I start crying. I am going to feel hideously disfigured and ugly. I’m experiencing a myriad of emotions; sadness, anger, acceptance, back to anger……. I’m sure it’s all normal to feel this way, I know. Deirdre didn’t want all her crap to happen to her teeth, Sally didn’t want the foot thing, and Gigglz doesn’t want to be in pain. Wow, we’re a sorry lot here, aren’t we!?! LOL kili — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Oh Kili I feel sooooo bad for you! I just don’t know what to say. {{{{{{{Kili}}}}}}} Love, Di

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

– The charter is available at: http://readystump.algebra.com/~asapm

Response:

((((((((((((Kili)))))))))))) You are a brave woman. All my special thoughts go out to you…you deserve every one of them. Love, Gigglz

Thanks, Gigglz! I appreciate it. kili — The charter is available at: http://readystump.algebra.com/~asapm

Response:

Well, I’m back from the Mayo Clinic for the first round of tests. Sheesh, what an ordeal! I have to go back next week to duplicate many I’ve already had done (they want to be SURE) and add on a few more. (I’ve already had a CT scan, a bone scan, an MRI, an ultrasound and a chest X-Ray.) Basically, the oncologists, radiologists, surgeons and specialists I’ve seen tell me that they’ve never run across a case like mine and it’s going to take some radical surgery to get my tumor out. The tumor is wrapped up in the connective tissue between my ribs and is almost reaching my heart. Because it’s almost to my heart and lungs, they do not want to have me go through radiation for fear that radiation could damage my heart and lungs. What they’re thinking they may do (but they’re still conferring and they’ll know more after more tests next week) is that they will remove my sternum, three ribs, my left breast and the muscle on my left chest side. Since that would leave me with a rather large hole in my chest that would expose my heart, they want to remove my lower two abdominal muscles from the "6-pack", place a strip of surgical gauze over the gap, and lay the removed muscles over the gauze. It’s totally scary, but there isn’t another alternative at this time. So, yeah, it sucks. It really sucks, but I thought I’d let you guys know. On a good note, my anxiety was so bad at the clinic that they couldn’t tap my veins because I was shaking so badly. They put me on Xanax, which seems to help – at least I was able to sleep last night. kili — The charter is available at: http://readystump.algebra.com/~asapm

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