kamataca

Your mom is lucky to have you there asking the important questions! We have sought second opinions when we felt they were necessary. You bring up a good point, though, in that whatever you do has to fit in your mom's comfort level. Sometimes that is hard for us caregivers, to remember that our Moms (or whomever) love us, but these decisions are ultimately theirs to make. It's easy to second guess medical decisions. At least you won't have to second guess if your mom knows she has your love! kelly

I'm not familiar with the treatment, but I hope it does the trick for ya! Kelly

After battling with the insurance companies and doctor's office for a few weeks, Mom finally got to go see the ENT (who ruled out the cancer in her vocal cords!!!). While this is GREAT news, the stress of actually getting to the Dr's office was annoying and an unnecessary delay. The Dr himself was fabulous, but his office staff was horrible. Although she had be recommended to this particular Dr by her onc. and pulm., the "ladies" in the ENT's office told my mom she should find a another Dr. Apparently Mom would have to pay 20% upfront if she went to the chosen Dr--no exceptions. After convincing Mom that we kids would all split the cost with her if it got to be too much, she finally got the app't (weeks passed during this time). The office staff reminded us several times that she would have to pay the 20% up front. Enough already. At the end of the day, Mom's part was $38.00. I offered to spilt it with her. All that fuss for a lousy $38. But the diagnosis...priceless! Kelly

It's all the "other stuff" that gets to us--having to change Dr's, fighting with insurance companies, filing paperwork, etc. I hope you can get this clarified soon and focus on what is really important. Kelly

I am so sorry for your devastating losses, and I am impressed with your passion to help others. I hope you can find an avenue for your energies. It sounds cliche, but if you can reach even just one person, you will make a difference. Good luck! Kelly

Turns out that the cancer on Mom's vocal cords...isn't! We received confirmation today that the spots are benign. Talk about one less thing to worry about. Mom's attitude is visibly improved in one short office visit (how unique). She has been depressed for about the last month, but she is on top of the world right now. I'll take it! Kelly

Wow, you really have a powerfully positive outlook! I'm sure your little one likes the fun times with you as well. Glad you found your way here. The folks here sure keep me going. Kelly

Since I've just been blessed with such a revelation, I thought I'd share. Last week I took time off and went to the mountains with a friend for a week of backpacking. We go every year, but this year I couldn't get motivated for the trip and almost cancelled it. Looking back I can see that I was suffering from insomnia, and the daily stress of being a caregiver (for someone who has taken care of me all my life) was wearing me down. My husband encouraged me to go, and wouldn't let me back out of the trip. Don't tell him, but he was right. It's not as if I forgot all my worries, but I was removed from them for awhile. I guess I don't have any more control over Mom's health here than I did in the mountains, out of communication, but I was able to let go. I also had to trust that if anything did come up, others would take care of it. And they did! Mom goes back in tomorrow to find out more about her vocal cords, and I'll be with her, but for today I will go over and show her all of my pictures from the trip, and tell her my tall tales. Turns out, she's glad I went too. So take care of yourselves as well! Kelly

Hey Lorrie! We'll pray for continued recovery. Be sure to take care of yourself during this time, too. In my mom's non-cancer-related surgeries, she had different emotional reactions that we generally attibuted to the anesthesia. We laugh about some of them now. I didn't understand it myself until I had surgery some years ago. I remember feeling out of control, and crying a lot (very un-me). Hopefully you guys will move past this soon. How lucky to have such a supportive you to help out! Kelly

Holy cow! You are a wealth of knowledge! Kelly

Ask for help everywhere you go. My mom has been able to have her Tarceva free, bc her Dr was able to work "something" with the drug company. (Mom had NO drug insurance) The hospital she was admitted to the last two times is not-for-profit, and has reduced her bill by 90%. The process to accomplish all of this is FULL of red tape, and is complicated, but sometimes you get lucky. At first my mom found it hard to ask for all of this financial help, as she liked to think of herself as independent and able to take care of herself. Now she is a pro at asking Dr's for samples of meds (they often have them from the drug companies) and anything else. What she has learned (as have we all, in helping her through the paperwork) is to not rely on anything, but ask for everything. The worst people can do is say No, right? Good luck to you. The cancer fight is hard enough with out the insurance / money dance. You'll be in my thoughts and prayers. Kelly

Here's hoping Monday brings you good news. You'll be in my prayers! Kelly

After being down in the dumps for the past week or so, my Mom decided to go to my cousin's baby shower...even though I couldn't go. She even had to drive about 200 miles (on her own) to get there, and stay overnight. I loaded her car with all of her oxygen paraphernalia (she's on 24/7) and off she went. It's great to see her striking out on her own, with a bit more confidence. She's physically capable of doing this, but hasn't been mentally up to it for awhile. I'm leaving tomorrow for a week to go backpacking in CO. I'm a little nervous about being out of touch and inable to communicate, but I know there are others who can take care of things while I'm gone. My husband thinks this will be good for me, so I'll take him at his word. Kelly

I don't what I can add to what Val said--she put it beautifully. Just know that we all care for you. I'm sorry that your wedding plans may seem clouded by this relevation, but I hope you still enjoy this time, and can enjoy it with your grandmother. If you check out the success stories on the board, you can see that those numbers we are given are just statistics. I wish I had more to offer you, but know you are among friends here. Kelly

Karen, Does your mom still have the use of her vocal cords? Mom is worried about having an electronic voice, though I bet my kids would think it is cool. Thanks for your help! Kelly

Thanks for sharing your great news with us! Kelly

In May, my mom's pulmonoligist causually mentioned that Mom's bronchoscopy (my medical spelling it horrendous) showed "distals on her vocal cords." Mom asked if this was cancerous, and the Dr. said it was. Fast forward to July, and Mom asked the rad. onc. about the vocal cords. He had no info in his files, but said that if it was vocal cord cancer, then that is a different beast from the adenocarcinoma that is in her lungs and on her skull. I checked back with Mom's pul. who said she knows she put it in mom's file to her onc., but can't remember if she mentioned it specifically to him. She assumed that since Mom was getting Chemo (just Tarceva) and radiation (just on her skull) it would take care of it. She spoke with the onc., and they want mom to see an ENT. Now mom's very upset about this 'new' development, and we are dancing with the insurance companies on who we can go to on it. She sees an ENT on 8/9 for more scoping. Does anyone else have experience with vocal cord cancer? We feel so lost. Thanks! Kelly

Hopefully that is one less thing for you to worry about. Thanks for keeping us posted! Kelly

Hey Raffielle! Welcome...you've found a very supportive community here. I'm new too, but I've drawn a lot of strength from the folks here already. I can imagine what a shock the diagnosis was for you. You sound like a very strong person who wants to take care of herself, not burden others, or be an object of pity. My mom is a very similiar person. You may be surprised by the reaction of those around you when you are ready to tell them. They might go through the same initial shock, but I hope you can find support there as well. It was so hard for my mom to ask for help, but once she did our community here responded for her. She now has plenty of rides to radiation and the myriad of doctor appointments she seems to accumulate. Plus, I'm less stressed now that she has other people she can rely on as well if I'm not readily available. Take care of yourself! Kelly

I'm new here, too, but I've found it to be a great place to find support and answers. Keep us posted on your and your mom's journey Kelly

Sounds like quite a journey for you. My mom is on Tarceva only (since March), and it has been great for her. Her face broke out quite a bit at first, but even that isn't a problem for her anymore. She did have bowel problems as well, and she ended up dehydrated (she also has an illeostomy, so she dehydrates easily) and hospitalized. She hasn't had another occurrance since then, so we aren't sure if it was a bug or the Tarceva that caused her problems. At that time she went back on it every-other day, but is now back on it daily, with no further problems (fingers crossed). We are thrilled with it, because she can just take it at home, and her tumors have not increased in size since she has been on it. I know everyone responds differently, but so far so good on Tarceva for us. Best wishes to you! Kelly

I'm so sorry about your friend, but she is lucky to have such a wonderful,caring person in her life. I know that when I get down about my Mom's cancer, my best friend pulls me through. What I need from her the most at those times is her understanding, but most of all the ability to talk about normal, non-cancer things. She helps me laugh...even if it is just re-telling some lame story from high school that we both were there for. Just this weekend she came over and helped me paint my room. It was a great break from all the other stress in my life, and my room looks great! We also stayed up late watching goofy movies. What a normal weekend. BTW, at this point my mom's only treatment option is Tarceva. For us it has been a godsend. She has had almost no side effects from it, and none of her tumors have grown since she has been on it. Everyone reacts differently, but we are thrilled with it. Good Luck! Kelly

Hello all! I've been dealing with my Mom's lung cancer since February. My family is very supportive, but I was looking for an empathetic ear. Mom has battled health issue all my life (fall outs from 30 years of Chrohn's disease) but this one has her scared. The recent diagnosis of vocal cord cancer (follow ups with specialists this week) really has thrown her. In all other times of crisis, her positive atttitude has pulled her through, but she's having trouble maintaining it. My father died when I was young, so it's always been my brothers, my mom, and I against such things. We are trying to help her with the physical, emotional, and spiritual aspects of this journey, but it gets tough sometimes for us as well. As I'm sure you understand, in addition to being a daughter, I'm also a wife, a mother of 2 young children, and a teacher. Thanks for having a great board here! Kelly