Geri

Hi Curtis. I so admire the way you are handling your grief and progressing with life. My Mom died when I was 16 and unlike you my dad could not or would not go forward with his life. Our home became a house that 3 people (I have a sister) lived in and my dad was never the same. He died 7 years later, still mourning her, all my mom's clothes were still there, her underwear was still in the drawer! As much as I missed my mom I missed my dad more, he was there but so very far removed from the man he had been. Your Katie is such a lucky little girl that you are there for her, making the most of what has been the most difficult time you will ever experience in your life, just the fact that she is happy speaks volumes to your parenting. Yes, it would be better for her if Becky were still there, but - and it's a big but - she has you and you are moving forward however hard it is at times. Keep doing what you are doing Curtis, you are an inspiration to us all. With greatest respect Geri

Good morning, remember me? I had my port installed after the first chemo when my veins kept rolling. I kept mine in for 2.5 years and it made chemo, blood tests etc a breeze, CT and MRI contrasts can also be put in that way. I also had an unrelated surgery on my hand during this time and my port was used at that then too. All in all it's real easy, once I was finished with regular tx I had mine flushed at my PCP's office every month (she has a nurse who is trained to access them). For me it was well worth it, not something I'd be concerned about having done again if the need arises. take care, Geri

I have also been told that 3yrs takes you over the hump. My onc told me that if I have any cancer from now on that it will be considered a new one and not a reoccurance. Feels good doesn't it, once you take it all in. Geri

hi, again. I've just read your profile and may I make a suggestion..........take off the (supposedly) from behind the NED! The hardest thing I found was to accept that the cancer had gone, I kept thinking that if I said it too many times I would be tempting fate. I've now realised that I should shout it from the roof tops and if fate is tempted and it comes back then I'll deal with that the same way I dealt with the first one. Heart disease used to be terminal now it's chronic, I prefer to think of cancer the same way. Think positive Geri

Hi, yes there are survivors out there. I'm 3yrs from dx and saw my onc last week - another clean bill of health. I'm to see him in 6 months and have CT scan etc (that will be one year after the last) and then if all is clear, in his words, " we may just have to stop meeting like this". I was dx Nov 01 and by Feb/Mar 02 my tumor was gone to the point that really only scar tissue could be seen. Due to allergic reactions and a couple of side effects it was a while before I was up to speed energywise but once I was I found that cancer became less and less the focal point of my day. I didn't find this sight until earlier this year - I was having a pity party one day and researched online to find someone who understood how I felt. I found the support I needed that day and have tried to give it to others from time to time. I don't come to the site often, cancer is not as all consuming for me any more. That will happen to you too, when I was at your stage I couldn't have conceived that I would be able to put it out of my mind this way, but it does happen. Cancer is no longer who I am. Before my tests and onc visits I get a bit anxious about all the "what ifs" but it doesn't last long. Maybe that's why so few survivors are around on the site, now that we don't have to take care of our cancers any more we are busy catching up on time lost to tx and tests and dr visits. My wish for everyone on this site is that they have the same outcome as me, survival feels great and hopefully I've been able to help a few people to stay positive about their survival too. Stay strong, I wish you the very best Geri

Hi Jen, It's been a while since you posted this, I've been away and am just now catching up. I read a very good article in the Toronto (Canada) Globe and Mail a while ago which said everything I'd been thinking about being a second class citizen in the cancer world. The opening sentences of the article were: "You've heard of the pink ribbon for Breast Cancer. You've heard of the blue ribbon for colorectal cancer or the sky blue ribbon for prostate cancer. But what about the clear ribbon? The clear ribbon is symbolic of the 'invisible disease' -- lung cancer." My friend had called to tell me to go online and read this as she said that it was exactly what I'd been saying. Everything I'd ranted about was there.The article then summed up everything I had experienced since dx 3 years ago (yes I'm still surviving). Several people had checked out my chest area when told that I had cancer - I guess to see if they could tell which boob had been 'fixed'! There was a distinct change of attitude when they heard 'lung cancer. Let's not forget the "did you smoke?" question from people who didn't know you well enough to know already! I'm not sure how we can change the attitudes but go for it, maybe you can change our clear ribbon in MD and it will catch on all over. The most telling thing for me when I read this piece by Andre Picard was that I no longer live in Canada and he was reporting the exact feeling I had in the US. I guess it's the same all over. Now what color ribbon do we use? Something eyecatching I think! Glad to read that you're on the way to long term survivorship-ain't it great, hang in there, the tx's will be over. take care Geri

Yes, you can feel as good as before.......I do. I'm almost 3yrs since dx and my case is the same as yours except for the collapsed lung. I felt less than perfect for about 18 months and then I started to get my old energy back. I was reminded very early on, by a cousin who's a nurse, that even without the chemo and radiation I was getting over a very serious illness (pneumonia) and would probably feel awful anyway. That really put things into perspective for me and I realised that when I'd a SLIGHT case of pneumonia before it had knocked me on my heels. The upshot of all this is....yes.......it does end, even if that seems impossible right now. Just be patient (easy for me to say) good days will be more frequent before long. Most of the time now I forget that I've even had cancer....that'll be your best feeling of all. Stay strong Geri

an add on to my last post, I ended up being about 2 weeks from dx to first chemo. Geri

Hi, sorry to hear the dx, but there is a lot of hope . I was dx'd with limited sclc almost 3 yrs ago and here I am writing to you. Mine was found when I had a sudden case of pneumonia, as you can imagine I was on massive doses of anitbiotics (which I don't tolerate well) and large doses of pain killers( which I also have trouble with). Needless to say I was more than a little spacey when I went for my first chemo - I was still waiting to see another onc for 2nd opinion - anyway the onc cancelled the session because I was really out of it and told us that waiting a week to start (this would be after my other onc appt) would not make any difference. Too bad that your doctor isn't more empathetic with his patients, I guess he doesn't realize what an impact his attitude has on them. Stay strong and know that there are survivors out there. I shall keep you in my thoughts and hope that your mom's outcome is the same as mine. Geri

Hi Dawn, First thing to do is take a deep breath.......I am the same age as your mom and if you go to 'my story' you'll see Geri's tale. That's me. I'm almost 3 yrs from dx and I'm going great guns. I have no more signs of cancer and have not had any for a very long time. Yes there are miracles out there, more, I think than we know. I like to think that most survivors are probably like me..........too busy getting on with life to dwell on the fact that we've HAD cancer. It's very frightening right now, the what ifs will mess with your head...they do with all of us, but it's important not to let them rule your life. Everyone on this site knows how either you or your mom feels right now, take comfort that we are rooting for you both and there is life after a cancer dx. I know, I'm living mine to the fullest. Take care Geri

From my lofty perch almost 3yrs from dx I empathize with everything everyone is saying. My radiation onc came in for his weekly meeting with me said hi, how are you and I burst into tears..poor man didn't know where to put himself for a moment! This, I found, was a new normal for me, days of deep dispair followed by a crying jag and then it would all be over for a while. My poor husband would sit at the dinner table wondering if this was to be the day that I had to empty my tear ducts! Sometimes it was but most of the time it wasn't - just like to keep him on his toes I guess!! When I started to lose my hair I was determined not to have the mangy dog look (didn't find this too appealing a look at the cancer center) the first thing I did was shave my head with a number one attachment (about 1/4 inch of hair). Then I found that showers were much easier to handle without the falling hair. I had a wig ready and several hats and bandanas. This was winter and I needed to be prepared.....The wig was very expensive and apparently looked real (seemed like a flashing light declaring "wig" to me) and I wore it twice. The hats I tried a few more times in public and then said to myself its their problem if they don't like my look. I had told my husband that if he didn't like the bald look I would cover up, he didn't mind it and I kept it! No more bad hair days and I could be ready in the morning before him. Everyone handles the hair thing their own way, just do what makes you comfortable and the rest of the world will handle it. I saw a lot of people with hair that looked far more bizare than my almost bald head. If the depression is getting to you get some help from the hospital, I was offered it and had sessions when I needed them. Stay strong, I'm making it so can you. Geri

Hi Addie, I've been away and have just seen your post. What great news, you're on the way out and I'm sharing your smile!! Stay strong , Geri

Yes I had it. I finished my radiation and about 2-3 months later developed shortness of breath - so short that when I just walked through the house I panted as if I'd run 5 miles (stairs were a real challenge and really put anyone around me on edge!!). Anyway pheumonitis was diagnosed and I was put on steroids which did nothing to help but made me sweat profusely. That lasted about 8-10 weeks and I came off the steroids, my onc told me that this delightful side effect could a) be cured with steroids, go away on it's own evenutally, c) stay forever. All in all it was going to be a crap shoot. Fortunately I came under catagory b and went off the steroids and it did go away.....it took a few months but gradually I could do more without it sounding that this was to be my last breath. I also coughed sometimes (the only time I coughed through this whole cancer ordeal) but only after exertion - like walking at a normal pace. I hope you fall under a or b and it goes on it's way. Geri

Just wanted to let all the new members of this 'club' that we've been seconded to know that there really are survivors. I have just had my 6 month check up, MRI and CT scan too this time, and everything is still clear. Aside from a problem with my medi port - which has now been removed - I had a clean bill of health for another 6 months. November will be my 3 year aniversary of diagnosis and then I go to yearly check ups. Hurray!! Keep the faith, I made it so can you.

It's been a while since my treatments finished and I took Anzemet the whole time I was on chemo. Other meds were tried at first but Anzemet was the only thing that kept it at bay. For breakthrough moments I took Ativan and kept a supply of ginger cookies at hand (they really helped). I found that if I went too long without food I would feel real nauseous and would get to the point were I couldn't eat. I started on carboplatin and VP16 and then changed to cisplatin and VP16 due to an allergic reaction. I tried several times to stop the meds in case I didn't need them any more but the nurses told me not to be a hero and keep it under control all the time. Hope this helps, as soon as I started the Anzemet I stopped hugging the porcelain! Be strong Geri

It's been a while but I had an IV of anti nausea meds(anzemet I think) and I think steroids before my chemo - carboplatin and VP16 to begin with and then cisplatin after allergic reaction - nothing at all before radiation. I was nauseous from day one of my first round of chemo, this was soon brought under control with anzemet and ativan for breakthrough. What helped a lot was firstly not going too long without food (even a cracker helped) and also ginger cookies. These were my best friend for the duration, Peak Freans ginger crisp were my favorite, I didn't go anywhere without them and found that they would cut the first rumblings of an upset. I've heard that anything ginger, tea, candied or in any form helps - I like the cookies anyway so stayed with them. Hope you don't get the side effects but if you do get the meds to control them and keep taking them - the nurses told me it's easier to keep nausea under control than get it under control and to stop being a hero and take the pills!! Good luck, Geri

It's been a while but I was given anti nausea and I think steroids before my chemo - carboplatin and VP16 to begin with and then cisplatin after allergic reaction - nothing at all before radiation. I was nauseous from day one of my first round of chemo, this was soon brought under control with anzemet and ativan for breakthrough. What helped a lot was firstly not going too long without food (even a cracker helped) and also ginger cookies. These were my best friend for the duration, Peak Freans ginger crisp were my favorite, I didn't go anywhere without them and found that they would cut the first rumblings of an upset. I've heard that anything ginger, tea, candied or in any form helps - I like the cookies anyway so stayed with them. Hope you don't get the side effects but if you do get the meds to control them and keep taking them - the nurses told me it's easier to keep nausea under control than get it under control and to stop being a hero and take the pills!! Good luck, Geri

My story begins in August 2000, we moved to Vermont for my husband's new job. After 8 months we moved into a wonderful new house and I set about getting my life in order. On Sept 1 2001 I stopped smoking after about 40 years and started a diet. I had been teaching a bone builder exercise program since moving and I had started walking for about an hour a day (no flat roads in this part of Vermont!) All in all I was fitter than I had been in a while, 20 lbs lighter and feeling great. However.......November 11 2001 I felt that I may be getting the flu, those symptoms passed and on the 12th I had a pain in my side/back that got worse as the day wore on but as I had an appt for a physical the next morning I decided to wait. By the next morning I couldn't breathe and the pain was now unbearable. My husband had to drive me to the dr who xrayed and found pneumonia and also a mass - the dreaded mass. Within an hour I was in a hospital bed being poked and prodded and readied for a CT scan. This was now Thursday, the results of the CT scan on Friday were not good and a biopsy was scheduled for Monday. By Wednesday I had the results - limited sclc, lower left lobe - and went home for Thanksgiving the next day. I imediately got a second opinion from Dartmouth Hitchcock in NH and started chemo straight away. Radiation followed in January. All my xrays and scans since then have shown first improvement and then no cancer. Today (at this time of the day I guess that's really yesterday) I had my 6 month check up and my CT scan and MRI are clear. I have one more 6 month check and then I go for a year. Can't begin to tell you how wonderful and frightening that sounds. A whole year without seeing the oncologist seems rather daunting but then 6 months sounded a lot last December. If all is well next visit I am apparently past the deadline for a reoccurence, anything showing up after that will be classified a new cancer. 3 years of my life will have passed in a blink, although at the time of treatment everyday seemed like a lifetime of feeling awful. I lost my hair, and had a new best friend to hug in the bathroom for a while but I made it. Pain and nausea can be gotten and kept under control with right meds and I was lucky to have the insurance that paid for whatever I needed. The downside was that I was living 2000 miles from my friends and there really was no help for either of us here. Our daughter came for the duration of my radiation and my sister came from England too, but mostly it was just downright lonely. Too bad I didn't have this group back then. Thats my story, I hope it can inspire everyone to keep the faith. I made it, so can you

Yes! I gained about 40 lbs, due in part to steroids with the chemo and then a course of steroids to combat pneumonosis(?). To begin with I didn't have an apetite and my husband gave me a box of chocolates and told me to get these into my stomach if nothing else........well before long my apetite came back and if it didn't move I ate it ( if it did move I caught it first and then ate it.) After an alergic reaction to carboplatin I was switched to Cisplatin and developed a craving for ice cream (which I do not usually eat very often) and was eating it by the gallon. My dr said that he had come across this before with cisplatin. Anyone else noticed this I'm still fighting to get rid of the weight but figure getting rid of the cancer was more important than regaining my girlish figure. Good luck getting it off and being cancer free Geri

You have to wonder why lung cancer is so difficult to track in the real early stages, can't feel a lump and no elevated PSA #s. Because the root cause has always thought to have been the dreaded cigarette we've been overlooked in many areas. I was at my fittest in years, had lost 20 pounds and was still dieting, walked for at least an hour a day (mostly uphill as there is very little truly flat land to walk on in this part of Vermont) and was teaching a bone builder exercise class. I felt great, one afternoon I felt a bit like the flu was coming but it didn't last. Next day I had a bit of a pain in lower side rib cage and shortness of breath. I didn't do anything about it as I had a physical app the next morning. By the next morning I couldn't breath without great deal of pain and had to be taken to the doctor's. Long story short, xray showed pneumonia and a "mass" by the following morning I had been told it was cancer and more tests were ordered. Two weeks later I started chemo, then radiation and have been fighting fit since the effect of the treatment wore off. Stay positive, I did and I've been 'clean' for a long while. Stay with the site, there's knowledge and support here. Geri

Knew that I couldn't take demerol when I was diagnosed so was put on Oxycontin, 90 mg daily and hydrocodone for breakthrough every 4 hrs when needed. These worked real well for me as long as I kept the dosage up - it's easier to keep pain under control than get it under control - the mantra I lived by and took the oxycontin regardless. The senna also worked wonders for me. Good luck, there has to be a pill out there that will work for you.

Have been where you are, when I found myself also whining about everyday stuff that I couldn't do - my lack of hair, dry skin, extra weight, some physical restrictions......the list goes on - I realized that I must be getting better. I was no longer focusing on licking the cancer, just whining about things that I would have whined about at any other time in my life! When I thought about it that way things were just a little more 'normal'

I don't know if this will be of help, I finished my chemo in May 2002 and both of my oncologists offered me brain radiation (I had shown no tumor for several months). The onc that I trusted most gave me 40% odds that "something was lurking" in a corner of my brain so I choose to see that there was a 60% chance that there was not and didn't want to risk porrige for brains with those odds. When my decision was announced both doctors said that they were pleased but had had to offer the treatment . I've now had over 2 years of remission and no signs of any changes, due for another brain MRI in June and am keeping my fingers crossed.......... if anything shows I shall be first in line in the radiation dept! I feel strongly that you follow your gut, I did everything that felt right to my instincts but I also had an oncologist that I trusted to tell me the truth. good luck with your decision, unfortunately there are no easy ones.

Yes she does have a chance, a big one. I've made it this far and there's been no sign of my tumor for quite a while. Mine was found Nov 01, chemo and radiation started straight away and tumor had shrunk by end of Feb 02. PET scan showed no sign of cancer in May 02 and, except for the after effects of of treatment for a while, I have been real good ever since. I guess I'm almost a poster child!! Stay positive for your Mom and MO's right don't listen to the statisics - I think my journey would have been much harder had I known what they said my chances were. Will be thinking of you all, and rooting for your Mom. Geri

thanks everyone for saying what I knew to be the case. I know I have so much to be thankful for, and I am, I'm just looking forward to the day when these thoughts are further back in my head. Obviously my number isn't up yet and there's more for me to do first - just having a bad day today I guess and I feel better for whining, thanks for listening. I'm usually much more upbeat and positive about it all, black humor got me through all the garbage 2 years ago and tomorrow this too will have a funny side! Geri