Leninie's health
Posted: Wed Aug 17, 2016 1:48 pm
For those of you who aren't on facebook..I'm copying and pasting the post I made on facebook earlier today to give you all information on what's been going on with Leninie. 
This will be a long post..sorry. For my friends that don't know, I have been diagnosed in past with a disease called Langerhan Cell Histiocytosis. It's reoccured. I had a bone scan last week, and the report came back showing a lytic lesion in my left leg (a hole in the shin bone..near ankle). Blood tests show that my pituitary gland is spitting out twice the normal levels of a hormone called TSH. There has been a lesion in that area for years..but it was asymptomatic so we just kept an eye out. Well..now with the new test results the doctor has put me on a synthetic thyroid medication to counteract the pituitary overachiever. What does this mean? A few things:
1) I'M OKAY!! Mentally and emotionally we have been thru this rodeo before. My doctors, my family, my friends are all more knowledgeable about treatments, affects, coping mechanisms. This is the 5th occurrence in a leg bone. We know what we need to do.
2) My doctors are the best around. Dana Farber Cancer Institute is one of the top rated cancer treatment facilities in the US. My orthopedic surgeon has operated on 4 other tumors in my leg bones and I have healed fine after each My oncologist is the best guy around. I'm in good hands.
3) My husband.. my daughters.. you can't ask for better!! Both daughters live close and both are eager to help with all things housework, food etc. Even the little guy has jumped in to help. When I told him that I needed to eat more Vitamin D foods..he's been cooking up eggs with cheese to feed me.
4) The doctor has given me the synthetic thyroid med that I mentioned before and new pain medication. I am still working on a balancing act with them because the pain meds make me loopy. My energy levels will improve I hope with the synthroid but then again pain medication lowers it..so there ya go. Decisions will be made regarding surgical/radiation options sometime this week depending on results of MRI that I went for Monday. Either way, I expect good outcomes. Since I'm a notorious night owl the glow in the dark bones are a plus!
5) For those of you that see me online on an almost daily basis..it will be a bit harder. I tend to withdraw a bit as a coping mechanism. I frequently leave computer and go afk for extended periods of time as needed. I am not deliberately ignoring people or being rude on purpose..I just get distracted by pain and have to go deal. I'm still okay though! It is my "normal"
So there you have it.. all the information that's fit to print. Thank you all for prayers and best wishes and the good thoughts. Keep posting your stories..your jokes.. your life events..I enjoy reading it all. Love you guys!!
Kim (aka Leninie/Codeblu to my gaming friends)
and then this update just a bit ago:
Okay.. quick update. Right after I sent out the posts I got another call from my primary care doctor. The results are in from the MRI and it shows more in the bone marrow/soft tissue area of the bone so it looks like we will be going the radiation route rather than the surgical removal/bone graft route they've done in past. Appts are being made with the oncologist as I type. Will know more after that first visit. They are moving fast on it though
This will be a long post..sorry. For my friends that don't know, I have been diagnosed in past with a disease called Langerhan Cell Histiocytosis. It's reoccured. I had a bone scan last week, and the report came back showing a lytic lesion in my left leg (a hole in the shin bone..near ankle). Blood tests show that my pituitary gland is spitting out twice the normal levels of a hormone called TSH. There has been a lesion in that area for years..but it was asymptomatic so we just kept an eye out. Well..now with the new test results the doctor has put me on a synthetic thyroid medication to counteract the pituitary overachiever. What does this mean? A few things:
1) I'M OKAY!! Mentally and emotionally we have been thru this rodeo before. My doctors, my family, my friends are all more knowledgeable about treatments, affects, coping mechanisms. This is the 5th occurrence in a leg bone. We know what we need to do.
2) My doctors are the best around. Dana Farber Cancer Institute is one of the top rated cancer treatment facilities in the US. My orthopedic surgeon has operated on 4 other tumors in my leg bones and I have healed fine after each
My oncologist is the best guy around. I'm in good hands.3) My husband.. my daughters.. you can't ask for better!! Both daughters live close and both are eager to help with all things housework, food etc.
Even the little guy has jumped in to help. When I told him that I needed to eat more Vitamin D foods..he's been cooking up eggs with cheese to feed me.4) The doctor has given me the synthetic thyroid med that I mentioned before and new pain medication. I am still working on a balancing act with them because the pain meds make me loopy. My energy levels will improve I hope with the synthroid but then again pain medication lowers it..so there ya go. Decisions will be made regarding surgical/radiation options sometime this week depending on results of MRI that I went for Monday. Either way, I expect good outcomes. Since I'm a notorious night owl the glow in the dark bones are a plus!
5) For those of you that see me online on an almost daily basis..it will be a bit harder. I tend to withdraw a bit as a coping mechanism. I frequently leave computer and go afk for extended periods of time as needed. I am not deliberately ignoring people or being rude on purpose..I just get distracted by pain and have to go deal. I'm still okay though! It is my "normal"
So there you have it.. all the information that's fit to print. Thank you all for prayers and best wishes and the good thoughts. Keep posting your stories..your jokes.. your life events..I enjoy reading it all. Love you guys!!
Kim (aka Leninie/Codeblu to my gaming friends)
and then this update just a bit ago:
Okay.. quick update. Right after I sent out the posts I got another call from my primary care doctor. The results are in from the MRI and it shows more in the bone marrow/soft tissue area of the bone so it looks like we will be going the radiation route rather than the surgical removal/bone graft route they've done in past. Appts are being made with the oncologist as I type. Will know more after that first visit. They are moving fast on it though
