warmpup Posted December 8, 2007 Share Posted December 8, 2007 See Profile Especially 10/22 on. Quote Link to comment Share on other sites More sharing options...
Liz13 Posted December 8, 2007 Share Posted December 8, 2007 Well, that sucks, Puppy. I've been looking out for you. I too, have been recently dx with 4 brain mets, largest 4cm. I am doing WBR 14, 15 out of 15 on Monday and Tuesday. Am slowly tapering of the Steriods. Also had a PET and will be following up with what "They" think are a few trouble spots. All in all, I feel pretty good. Ampy, muscle soars, bruises, knees are killing me, I was Nausea the first week, but that too has past. Lost all my hair. Axtually shaved it, couldn't stand the hand fulls. I do hope you feel better soon and can continue on your fight. I will be praying for you. How was the surgury recovery? Hugs, Liz Quote Link to comment Share on other sites More sharing options...
warmpup Posted December 8, 2007 Author Share Posted December 8, 2007 First off, thank you for calling me puppy. I do believe you are the first one on this sight to get that. Now, as to what is in my head exactly, I don't know. The radiologist told my ride one day while I was being radiated but he won't talk with me about what she said to him so I have a follow up appointment with her on the comming Wednesday. Now as for my hair, this came as quite a suprise to me. All thru Chemo, I kept is short with a #1 Clipper comb just in case. It may have gotten a little thinner but one could not tell because of the cut. My #10 head radiation occured on a Wednesday. When I awoke Saturday morning, I saw all this short hair on my tshirt sleve and wondered where it originated because I have not had dogs in this house for 2 years. Well, on Monday morning, preparing to go to work, stood in front of the bath mirror to shave and discovered it was MY hair! A little patch left on both sides which dissappeared by Tuesday morning. What really really concerns me is all of this STUFF is happening way to quickly. First DX in May and the head DX in October . . . just leads me to believe my life is short. -Puppy Quote Link to comment Share on other sites More sharing options...
Patkid Posted December 8, 2007 Share Posted December 8, 2007 okay, pupster, I am speaking as a person who is alone like you. First, Take some of the pressure and worry off by rallying the troops. Have a code or system where you can check in w/ someone every day. Give yourself a sabbatical from work for time to catch up with all that has happened in the past few months. BREATHE If $$$$ is an issue (I get that) apply for SS Disability. YOu are clearly eligible. They approved my husband Brian over the phone. There is a 6 month wait, but you can get it started. Try to be still and let your body tell you what it needs.....................I bet it tells you to rest a bit and catch up w/ yourself. I care, I understand and I am uploading all positive vibes and hugs. Pat Quote Link to comment Share on other sites More sharing options...
warmpup Posted December 8, 2007 Author Share Posted December 8, 2007 OKay Pat I work for a small business so if I take off for and extended amount of time, they would have to replace me. However, today, I am on top of my game and feel great! And if i finnish my work, I have been leaving a bit early. Yes, during chemo, I was exhausted all the time but did okay otherwise . . . suffered no other side effects for 13 sessions besides white count dropping too low. Yeah yeah yeah $$$ is always a concern. I work for a small business so there is no retirement plan, just a 401K which I can't touch without penalty for another year, however my main concern is insurance. Under COBRA, I can extend for 18 months, but what if I last more than that!? BTW, you are the first to mention SS disability . . had no idea . . a month ago, I felt disabled because I could not speak but today I feel on top of my game. Getting in touch with someone every day is a great idea, THANK YOU! and THANK YOU for all the positive vibes and hugs. They mean so much to me! -Pupster Quote Link to comment Share on other sites More sharing options...
mary colleen Posted December 8, 2007 Share Posted December 8, 2007 Pup - I understand how discouraged you must feel. My husband had a large brain met last April, and went through brain radiation as well. By the way, he had about the same length of interval between initial diagnosis and the brain met, and I was additionally discouraged by that as well. Couple of things I want to share with you: 1. You are just a short time out of the brain radiation, and for us, you are at the point that was just about the hardest. The delayed side effects of brain radiation hit my husband hard at about the point you are at, and I think we honestly thought that he would not ever get well. He has improved dramatically since then. Keep your eye on the light at the end of the tunnel, and know that it is there. 2. To say that I have done extensive research on brain mets with lung cancer would be a major understatement. I have read thousands of studies and abstracts. I have read so many that I now have difficulty finding any that I have not already read. That research gave me substantial hope. There are many lung cancer/brain met patients who end up doing very well for a long time. Do not be hopeless. 3. Why do you think that you have become a burden to your co-workers? To many of us, myself included, it's a pleasure and and an honor to help my friends in need. I'll bet they perceive no burden at all. I know that it's tough to be dependent at all, but that's what we are all here for. 4. Last, we are in the process here of applying for SSDI (Social Security Disability Income.) Our contact at the SSA told me that they will probably approve my husband retroactively to at least April, when he developed brain mets, and possibly to October 2006 when he was first diagnosed and began to work intermittently (surgery, chemo issues.) Whatever retroactive date they approve you for, that begins the ticking of the clock toward that 6 month waiting period. It also begins the countdown toward the 24 month waiting period for Medicare, which is very important - even if you don't really need the SSDI income, the eligibility for Medicare can be a tremendous help to folks carrying their own medical insurance. Please apply for SSDI. Since I have recently been through the loop, I would be MORE than happy to help guide you through the application process (much of it is online) if you PM me. Know that we are all here for you. Mary Colleen Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted December 8, 2007 Share Posted December 8, 2007 I cannot add to the great info you have already gotten here but wanted to add my thoughts and prayers. Please keep us informed and let us know how else we can help. Sending hugs, Christine Quote Link to comment Share on other sites More sharing options...
warmpup Posted December 8, 2007 Author Share Posted December 8, 2007 OKay OKay OKay I WILL begin the SSDI application! Actually, that would take a lot of worry off my mind! Reading some of these profiles, I feel EXTREMELY lucky because I handled the 13 Chemo session very well. I felt guilty going home after the long sessions and I would go to work after the short sessions with no appearant side effects. Half way thru, about week 8 or 9, I was exhausted and stopped jogging and riding my bicycle but that's ok. Now, as far as the head radiation, I do have constant ringing in my ears, some sensations in my head, I can't call them headaches because I am not compelled to take mortin for them and I have problem at night, evidently my iris' have become lazy. OH and the hair falling out. Quote Link to comment Share on other sites More sharing options...
Liz13 Posted December 9, 2007 Share Posted December 9, 2007 puppy..Just lost everything. Trying again but I am on ambian. Work screwed me. Took all of my insurance, Long term, Short term, Life insurance, medical. I had 250,000 life, no more. I had 950 a week short term, no more. Now I get 1100 a month unemplyment. Pay 392 for COBRA for 18 months. But I beleive that you can get a 29 month extension to get to medicaid, lost 10 months of benifits waiting for them to figure out how to get rid of me. Good news is I now am the proud owner of a right to sue letter from the EEOC. Just need the attorny now. Going to check with Lance Armstrong. They said to call back when I got one. SSDI approved mine in 3 weeks dated back to the day I was fired. First check in feb. I have also gotton other pension plans from my old union and another company I worked managment for. One is a flat paymeynent and the other money is mothly. I'm also working on my 401k, got to be a way to spend it. I'm looking for an investment for the kids, just in case, for like life insurance. Personally, I feel good. TIRED, WIREDED. STERIODS ARE TEARING ME UP. Bruises, knees killing me, can;t sleep. I also didn't loose much hair with chemo or lung radiation. I did take Bioten then. I'll start again after WBR. It's a hair and nails mineral. I started WBR on a Tuesday, It took 13 days to start falling out but only 2 for me to shave it. And I don't care who sees it. No wig, hat, rag.... I beleive that my brain mets are from last year that got by and when they are done I'll be back in remission. I'm a bit piturbed that I had to wait for sysmtoms to find them. I feel the a MRI should be a good 6 month followup. But this time, I'm taking over. After brain mets, no new chemo untill they show me the cancer. This is a little better. Sorry about the mumble last night. But, boy. I slept well. Love, Liz Quote Link to comment Share on other sites More sharing options...
Eileen4 Posted December 9, 2007 Share Posted December 9, 2007 Hi Pup, I'm glad you're posting here and hope you keep in close contact with someone. Going through all this is the pits, without a doubt but there are some great people on this site who will be there for you. Sending my best and keeping you in prayer. Eileen Psss...Hiya Liz Glad to hear you got your "Right to Sue" letter. I'm looking forward to your phone call... Quote Link to comment Share on other sites More sharing options...
Heather_T Posted December 9, 2007 Share Posted December 9, 2007 This does suck!!! I thought the same thing with me. After finishing my Chemo in Mar 29, then had my left lung removed on May 29 and thought we were cancer free. Well in August found out I had a brain met. Did the radiation, steroids that I HATE and then was very lucky and was to have the brain tumor removed 3 weeks ago. I sound pretty much exactly Liz did with WBR and I did have the ringing also Pup but it does get better. We have to fight. I never feel like I am losing the battle I will always be kicking the "CANCERS" A**. I will keep you in my thoughts. Quote Link to comment Share on other sites More sharing options...
carolhg Posted December 9, 2007 Share Posted December 9, 2007 I am frustrated also! Where is the world? Do they not understand? A cure MUST BE FOUND FOR THIS AWFUL DISEASE NOW! Carol Quote Link to comment Share on other sites More sharing options...
Liz13 Posted December 9, 2007 Share Posted December 9, 2007 I'm so funny. Sorry gang. Drugs can do bad things. Spilled water all over my computer and bed last night, but I'm back. Surprised computer survived. Only because I bought the dumb person extended warrentty. Quote Link to comment Share on other sites More sharing options...
Eileen4 Posted December 9, 2007 Share Posted December 9, 2007 Can someone fill me in...I was told you could not apply for SSDI until you quit work. Can you still apply if working part time? TIA. Quote Link to comment Share on other sites More sharing options...
warmpup Posted December 9, 2007 Author Share Posted December 9, 2007 Oh My Word, I Hope one can because I did yesterday, even though, I am prepared to quit work, I surely don't wish to die working Quote Link to comment Share on other sites More sharing options...
Liz13 Posted December 10, 2007 Share Posted December 10, 2007 All I know is my date was last work day, not DX. Others maybe different. I was working full time and got fired. Quote Link to comment Share on other sites More sharing options...
warmpup Posted December 10, 2007 Author Share Posted December 10, 2007 Well, My employers want to hire some help for me. I suspect that the help would actually be my replacedment. I turely don't wish to die working, so if I need to get fired, it can be arranged. Quote Link to comment Share on other sites More sharing options...
Liz13 Posted December 10, 2007 Share Posted December 10, 2007 Do you have disability through work? Long term, short term. Do you have life insuance. Do no get fired, They will take it all away. Go out on FMLA, take work Disability, Keep your insurance. Pay through the nose. Do not let them take everything you paid into away from you. Stage 4 is automatic approval. I'd go back to Brain Met dx. That makes it stage 4. You tried to work but just can't do it. You need to get better. My work benifits were 67 % of gross wages. Thats 52,000 vs. 22,000. You do the math. FMLA. Gives you 12 weeks to figurer it all out and we will help you. Hugs Liz. See you Wendsday Eileen. Maybe Christian will join us. And Nova and Gilda. I'll make the plans. My house on Thursday. Love to you all. Puppy, Feeling any better yet? I sure do. Lets go play pool, I have the cue ball. Hugs, Liz Quote Link to comment Share on other sites More sharing options...
Eileen4 Posted December 10, 2007 Share Posted December 10, 2007 Hiya Liz, I'm confused, babe...are we meeting on Wed or Thurs or both days?? (I work on Wed until 4pm but I'm off all day on Thursday.) Let me know what's up please. Glad to see you sounding so chipper and making jokes--good for you Liz! And looking forward to meeting Nova and anyone else who can make it. Keep smiling Eileen Quote Link to comment Share on other sites More sharing options...
Liz13 Posted December 10, 2007 Share Posted December 10, 2007 Lets see if we can get something going Thursday. I'll get back to you. Liz Quote Link to comment Share on other sites More sharing options...
warmpup Posted December 10, 2007 Author Share Posted December 10, 2007 I work for a very small business, 40 Employees total. No dissability, no long/short term care, $10K life. The health so far has been very good, the most I've paid is $20 or 30 to see a doc and 15 to 50 for prescription drugs. FMLA ??? what is this? Brain Mets are auto stage 4 ? OH MY WORD again I had no idea. Just like when I could not type or talk I had no idea how much trouble I was into! And the mistakes I made at work is totally illogical. Took me weeks to straighten is all out. Quote Link to comment Share on other sites More sharing options...
mary colleen Posted December 10, 2007 Share Posted December 10, 2007 Pup, Yes, technically, brain mets are distant metastases and put a patient into Stage 4. However, there are many people who go on and return to normal lives and lengthy disease free periods after having brain mets. The SSA did tell me that the Stage 4 status will ensure that my husband is approved for SSDI benefits, and I think the same would appply to you. "FMLA" is federally mandated family medical leave, which entitles an employee to 12 unpaid weeks off work per 12 month period for their own illness or that of a family member. However, I am fairly certain that it does not apply to companies with fewer than 50 employees. I REALLY think that the best thing you can do to protect yourself is to get that SSDI app going and get approved. By the way, you can earn limited amounts after being approved without endangering the benefits. After applyng online, I found it very helpful to go to the SSA office and meet with someone - much of the documentation that the SSA website tells you that you must provide is actually unnecessary, according to my local office. You can find your nearest office on the SSA.gov website with a zip code search. Click on "about us" (up on top) , then "office locator". Hang in there - take care. Quote Link to comment Share on other sites More sharing options...
Patkid Posted December 10, 2007 Share Posted December 10, 2007 Also, You can call the 800 number and get an APPT at your local SSA office rather than sit and wait. They were WONDERFUL to us. Quote Link to comment Share on other sites More sharing options...
J.C. Posted December 11, 2007 Share Posted December 11, 2007 Your words-- Venting - not encouraged are wrong now........ Hello Pup, You got a lot of answers from people that know the rules in the States better than me, and were able to go through the treatment you are facing........ so chin up, people are here for you, but to get an answer we have to know how you are doing........... Hope all will go well, don't forget that the radiation kills good cells at the same time as the sick ones but that all the good ones will come back with time. Fpr WBR they are very accurate on the spot they radiate so the minimum cooking is done. Train your co-worker well and you may get the chance of helping him a few hours each month/week with more $$$ coming your way if it is allowed by the SSI. And.....don't forget to keep us up to date with your treatments. Jackie You will be done for Christmas and free to enjoy the festivities. Quote Link to comment Share on other sites More sharing options...
lc46 Posted December 11, 2007 Share Posted December 11, 2007 Hi-I'm sorry to hear about your brains mets -but know that the whole brain radiation will work and you will get through this. There are many people on here- ( my Mom included) that had brain met/mets and got the WBR and are doing fine. I can only tell you my Mom's side effects were-Ears swollen (couldn't get q-tips in them) tongue swollen (very strange feeling she said) lost all her hair for a good 6 months-(it is just starting to grow back now). Hoping it kicks those little mets butts!!! You have a lot of people on here you can talk to for support-so don't feel alone-even if you are. Dar Quote Link to comment Share on other sites More sharing options...
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