Littlegirl

OH MY GOSH...I was impressed! AND felt guilty and realized I need to get on my treadmill to keep up with you! Thank goodness I don't really have to do that now that I know its still in the back of the truck! What a relief, I think the dust on the treadmill would have messed with my allergies! Karen

Kathleen - Ramble on...you make sense to me. It's hard to be in limbo and not know what to do or even what to think! I'm glad your mom's doctor admits that nobody really knows how long your mom has, it IS the truth. My mom is 78 and though she seemed to be tolerating her treatments better than we expected she is done now with the radiation and is not bouncing back as quickly as we had expected. Her doctor did plan on doing at least 4 more chemo transfusions but mom is tired of just not feeling well and I don't think she will have any more treatments. My mom also has the slow growing type (non-small cell, squamous) and the doctor has said that possibly it has been growing for the past 7-10 years (without causing much of a problem). The optimisitic side of me wants to say "We've torched this tumor a bit, and possible its been around for 7-10 years already...maybe mom can have several more good years ahead of her even without anymore treatments." The not-so-optimistic side of me spends too much time on this site and fears the worst. I would not say that my mom is ready to give up, just ready to enjoy the rest of her time here without feeling ill. I'm hoping that is what she gets. I'm hoping you still have planty of quality time left with your mom too. Make the most of it! Karen

So sorry to hear about the loss of your father! I would love to hear more about his story if you feel up to sharing that with us. Your family is in my prayers. Karen

Hi Jane, sorry about your dad's situation and praying it is 'something else'. My mom's cancer was also found by accident. She is 78 and had to have a complete physical to get the go ahead for cataract surgery. She also had a bad cough going on (worse than her usual emphysema cough)and her doc had prescribed some antibiotics as he suspected some type of upper respiratory infection. Her chest xray came back with a 'shadow' and she was sent for a CT scan on a Friday. Her results were also back that same day, showing a 10cm mass, and she had an appointment with a pulmonologist that following Monday. Mom's general practioner said the mass could have been scar tissue from a previous infection or some type of bacterial infection but the pulmonologist took one look at the x-ray and said he was 95% sure it was cancer and the bronchoscope that same week confirmed it and told us what type. She also had a PET scan that week to determine if it had spread. You should have the results of the CT scan by now. Don't be afraid to call and follow up or ask when they will have an answer. (They may not give you info directly if your dad's paperwork did not list you as a contact.) It may be someting minor but you will just sit there and worry until you know for sure. And if it is cancer I'm sure you want to start fighting it off as soon as possible. Hang in there! Karen

Great post Darrell. I think I missed the relay in my area this year but you've inspired me to participate next year! Sorry to hear about your girlfriend, sounds like she is missing out on someone special! Karen

I think being in a position that requires some a little help from others inspires us to offer more help to others. I know with the issues my parents have been helping we have really been helped by the kindness of our their neighbors. There is an elderly couple that live up the street from us that we haven't really gotten to know as they mostly stay in their house. Last week as I drove by I saw the paramedics had been called as the wife had fallen in the driveway. (She was OK, they just helped her up and left.) A bit later in the day I went up to check to make sure she was OK. I told them that my parents are about their age and are having problems in their 'golden years' and that we rely heavily on their neighbors who are always helping out. I told them I wanted to extend the favor so I left my phone # and told them they could call me ANYTIME they needed ANYTHING. I also stopped by on my way to the store one night to see if they needed anything but they declined the offer. They will be moving in with their son soon. Karen

Val - you stated yourself you KNOW your mom was a fighter, please don't let this phrase hurt you. When people are hit with this disease it is not a fair fight. I do know where you are coming from though as my own mother is about to make the decision that she has had enough treatments. At first I was reluctant for her to give up her 'fight' but I know she is making the right decision for her. She is recognizing her limitations and fighting to have quality of life for her time remaining here on earth. A warrior is a warrior. Our mothers will be remembered for the ways they fought throughout their lives, not just the end. And any casualty of this war makes them a hero regardless of how quickly it takes them. Sending you a Purple Heart for your mom. Karen

Tami - I think it is a good idea to see your doctor but please don't get too stressed about this before you are told you have a reason to be. You've had alot to deal with lately and I think it could just be the stress getting to you. I just turned 38 and lately have not felt as 'sharp' as I used to be. Forgetting things I never thought I would, going to store and forgetting what I needed, driving and briefly forget where I was headed as my mind is drifting somewhere else and so on, and basically just having problems keeping up with day to day life. Let me also add that it is my MOM that has cancer, not me, so I cannot blame it on chemo brain or fatique from radiation. I just think it is the new stresses brought on by my mom's condition added to my previous stessors. Hope your doctor can tell you this is nothing to worry about and help to get this under control for you. Karen P.S. For what its worth, I think your post sounded very clear and well written!

Kelly - I know how frustrating this must be for you. You want to know EVERYTHING about your mom's situation and there is a link missing in the communication line. See if your mom will sign a release stating the doctor can discuss her visits and condition with you. This is very convenient (even for appointments you can make it to) as new questions always seem to pop up. And sometimes it is easier to talk to the doc about your mom if she is not there. (Not trying to be sneaky! In my mom's case I think there are things she does not want to know but feels better that WE know.) My mom has 7 kids and we take turns going with her. (And some of the early appointments MOST of us went with her.) When we relay the info to the other siblings someone always comes up with a question we should have asked. Mom's doctors have been very helpful in this area. (We don't all call the office (we don't want to overwhelm them), but we are all listed on her medical release form.) I understand that you cannot make it to all the appointments but if you can build a relationship with the doctor too it will help. I know my mom normally hears only what she wants to hear, and needs some coaching in some areas. When her doc stated she should get an MRI of the brain she was VERY much against the idea. She already had chest X-ray, CT scan and PET scan and she felt this was just one more test they did not need and that they had all the info they should need from the previous scans. She did not realize how easily this spreads to the brain (or chose not to hear that part). I KNOW if I had not been at that appointment she never would have had the MRI which has given us some peace of mind if only for a little while. My point being, if her doctors know you and you call to ask that might share something like this with you. Good luck with the cancer battle and with your new job! Karen

Lorrie - Please don't feel sorry for posting about Gary's symptoms as you never know how the cancer or treatments may affect someone and if this is cancer related or something else. We are here to support you in whatever way you need. Hope Gary is feeling better. Karen

Val - I enjoyed your post and I am glad that you shared it with us. Karen

Sherri - I am so sorry to hear you have lost your dear dad and that you did not make it there in time for the last good-bye. Please find consolation in the fact that he went quickly in the end and did not lay there suffering for an extended period of time. And I am sure he did hear your last good-bye. Sounds like it was a lovely service. Your dad did fight the good fight and you were there by his side. I'm sure he was so proud. Karen

Stephanie - I am so sorry that all of these horrible things have hit you all at once. I am sure your head is spinning. There are several Stage IV survivors on this website so don't lose hope that your mom can be a long term survivor as well. I don't know anything about SCA1. Is it possible that you could be a carrier for the gene and never actually have any symptoms of the disease? It IS possible that they will develop a treatment or cure before you would show signs of the disease! I'm praying that you find some more peaceful days ahead and that you and your family start getting some good news for a change. Hang in there!

Thanks for all your encouraging words of support. Ellen - thanks for letting me know how long it took your husband to bounce back. Mom seems worse now than when she was having treatments and I know its early yet but its hard to not wonder if it is from the treatment or if the cancer is getting the best of her. She was not sick or in pain before treatment and kept very busy so she is eager to get back to 'normal'. Karen

Praying that hospice can quickly ease your dad's suffering. Hang in there! Karen

I am so sorry you are going through this rough time. Praying that the steroids and radiation bring back your old mom again. Karen

Susan Sarandon. They don't really look alike but have a similarity in their eyes. Think Susan would dye her hair blonde for my movie? Karen

Congrats!!! Please do not let those guilty feelings enter your brain! There should only be room for appreciation of being a buddy of NED and you should feel PROUD that the newbies here have someone to look up to and someone to give them hope. Karen

I was going to post this article also, as we have had a BAD experience with this type of machine. My parents were sold one of these machines while trying to get a mold problem cleaned up in their basement. Mom already has emphysema but while this machine was plugged in her breathing became VERY bad. This all just happened to be going on at the same time mom was visiting many doctors and getting her diagnosis of lung cancer. Mom felt it was the machine affecting her breathing so she unplugged it. The next day we had an appt with the pulmonologist and her breathing was only at 29% capacity. While discussing her health history we mentioned the mold and the air purifier. The doctor said those machines should come with a warning as they are VERY dangerous to people with breathing problems as they emit ozone. My mom went back to the doctor the following week and her breathing was up to 45% capacity. We believe this machine could have killed our mother. I also believe that if that had happened we would have thought it was the lung cancer, not this machine. I do believe that some air purifiers can help, you just need to be sure it is not one that emits ozone! Karen

I've been lurking for a few months now and have decided it is finally time to come out of the dark and introduce myself. My 78 year old mother was diagnosed with NSCLC, Squamous cell this past February after going to the doctor for a routine check-up to clear her for cataract surgery. The day she was told that she had cancer she attended a funeral for my dad's cousin that died from lung cancer. We were also told that it appeared to have spread to a lymph node and plearal lining. But after the PET scan and Bronchoscope they confirmed that it was Squamous cell (slow growing - yea!) and that it was contained in the lung and not spread to the lining or lymph nodes. We felt that was reason to celebrate. "Mom has a tumor the size of a grapefruit but it is slow growing and not spread so we are thankful!" Mom has just completed 35 rounds of radiation and 7 doses of chemo. She was scheduled for 2 more days of radiation this week, but she has had problems eating due to swallowing and the knot in her stomach so the doctor said he is comfortable with today being her last radiation. (She lost 3 pounds this week.) Mom has a weak stomach and normally does not tolerate meds very well so I am VERY pleased with how well she has done with her treatments. She has been extremely tired and has had problems eating but has continued to eat despite the problems. She was a bit sick last week so they gave her a couple days break to help get her through. Also has burns from the radiation but she is a trooper and does not complain. Her doctor wanted her to have 4 more full dose chemo sessions but I think mom is tired of not feeling good and wants to be able to get out and enjoy what time she has left so I don't think she will complete the rest of the chemo treatments. We've also been dealing with health issues for my 80 year old father. Actually, we have been taking care of him and his issues more than mom which is ironic as she is the one who is REALLY sick. Luckily I am from a large family so we have been able to share the responsibilities, but sometimes it still seems overwhelming. My heart goes out to all of you who have to battle this on your own. I have learned a LOT from this site and am thankful for all of you who have shared your stories. Karen

A second opinion will make you feel more comfortabale about what is going on and what is being said to you. Just an FYI...my mom's radiation oncologist told us this morning that the tumor could/should continue shrinking up to 6-8 weeks after completing her chemo/radiation treatments. Karen

A second opinion will make you feel more comfortabale about what is going on and what is being said to you. Just an FYI...my mom's radiation oncologist told us this morning that the tumor could/should continue shrinking up to 6-8 weeks after completing her chemo/radiation treatments. Karen

Hi Rosemary, My mom is only 78 but has severe emphysema and normally does not tolerate meds very well as she has a weak stomach. For the past 6 weeks she has been having radiation daily and low dose chemo once per week. She has handled the treatments much better than we all anticipated. She has been very fatigued, but she recognizes her limits and naps often. She has problems swallowing and the 'knot' in her chest/throat but I understand that is from the radiation, not the chemo. She did vomit a few times last week, but I think alot of that has to do with the Boost she is trying to force herself to drink. Her doctor is very adamant that he does not want her to lose any weight and so he gave her a few days off last week to let her feel a bit better but she is back on treatments again this week. (And she has NOT lost any weight.) Meds have come along way and the docs will give her other meds to fight the side effects. Please let her know that many people have very few side effects as positive thinking will go a long way in making her feel better. (I know when my kids are sick I feel ill wondering if I am getting sick!) And my mom was also given meds to help her relax for the scans that made her sleep alot. Good Luck! Karen

How about MISSUMA ? for miss you mom (or grandma). Karen