Gyongy

One year seems like a long time but is just a blink when things are going upwards. Congratulations Cindy, you made the first hurdle and I wish you all the best for many more. By the way, rebirthday is such a wonderul term for what we are doing. Georgette

I am so relieved that I am not alone in feeling such sorrow for the loss of my "real" (pre cancer) life. My sadness is at times so overwhelming that all I do is cry. My loss of everything I loved in life, especially my health and the life we led has been devastating. Due to some really strange events my husband and I have lost everything: Last summer we sprayed in the house with insecticides to get rid of wood ants. The stuff got into the floor where is stayed volatile and over several months poisoned me to the point where I developed such chemical sensitivity that I could no longer stay in the house. Everything we had, which could not be washed, was contaminated for me so that we had to get rid of it: books, paintings, pictures, furniture, all electronics, just about everything. We moved into a rented house, with just a few things we salvaged from the house. That is when I was diagnosed with NSCC SCC. We got into the car with whatever we could put in and went to MD Anderson. Three months ago I had the lower right lobe removed. Since my release from the hospital I have been back 2 more times for different things (fluid build up, pneumonia) all the while going from the hospital to a hotel. Finally on the first of May we rented a house in Austin, TX since I have lost too much of my breathing capacity to return to Santa Fe where we lived. I still have pain in the surgical area and have lost most of my muscular strength due to long period of inactivity. We are trying to furnish this place, build up some semblance of a home for us. I miss my old home, my friends, my old life, the sense of piece and comfort I took so much for granted. Now I live in fear, just waiting for the next shoe to drop. My husband, who for all this time since we left our home has been cooped up with me mostly in some small hotel room, has been incredibly wonderful and supportive. I should be grateful I have him and have done OK so far but I only see the devastating loss of all we have had: my dream house, all my treasured possessions that are gone, even the photographs of our life together. I am 60 years old and starting out and I hate it. One of those things, cancer maybe, is hard enough to take; the chemical sensitivity to all petrochemical products makes me feel like a freak and not part of humanity. Just as an example: when we moved into this house we had to buy a bed. No one thinks about it unless they have to but new beds off-gas for a few months very powerful chemical smells which bother me all the time. Yet, a bed we needed to have. So we drag the bed outside every morning to air out in the sun and drag it in to sleep on. Well, I don’t drag it any more since I pulled something inside and have been hurting ever since. LOL Sorry, I know I should not be wining so much but I had to tell it to someone. I hate it that I can’t live my retirement years with some sense of comfort and happiness. I don’t know how to even imagine being happy again. Thanks for letting me rant. Gyongy

I was told that the chemo is not necessary for stage IA tumors. I am not sure this is the best for everyone but for me this is what I chose to do. If I remeber correctly, the Japanese study that looked at this daae was looking at tumors classified in stage IA to IIB, so the differences could be attributed not only to the variety and agressive nature of cancer cells but the stage the person is in.

I thought I was the only person who felt such a fear about any changes in my body. I have not have had my first 3 month post opertive check up and when they told me they would take only an -ray I insisted they do a CAT as well. If I could afford it I would have all the rest, bone, MRI, etc. done as well on a regular basis. I was also really surprised that MD Anderson (which is rated as the top Cancer Center in the US) did not utilize the "green light" bronchoscopy which can detect extremely small cancer cells in the bronchial area. I was extremely lucky that my pulmanologist ordered a CAT scan last November when I had a persistent flue or bronchitis for several weeks. The x-ray they took a month later in preparation for the diagnosis and surgery still did not clearly show the nodule, CAT scan did a month and a half earlier. I have had a really unusual event last summer: we sprayed insecticide in my study and the stuff went into a crack n a tile which allowd the stuff to stay in its liquid form for months (liquid insecticide is extremely poisenous) and by the time we figured out something was wrong I was developing an extreme allergic reaction to all chemicals. particularly petrochemicals. Eventually it got to the point where I could no longer live in my house or use any of the stuff in it unless it was completely washed. We ended up leaving the house and all furniture whiccch could not be cleaned (wood was one such thing since it is absorbed into the wood). Effectvely, we became homeless. It is at that point that I was first tentatively diagnosed with LC. We lived in a house that I felt was my dream house, in a town that I thought was paradise (Santa Fe, NM) and suddenly my whole world was gone. As I sit here, writing in a hotel room, I am so unsure about anythingin my future. So I worry that the C will come back, that I will never have a home again and that I will never feel happy again. If my head hurts I think it has spread to my brain, if I have a bone ache I think it has gone to my bones and I don't know how to eveluate anythig normally. I did not have any particular symptoms to warn me about c, I just had a reaction to chemicals, including cleaning supplies, gas, perfumes and a thousend other things. Will it ever get better? I can't even imagine it and when I try I fear i will jinx myself and something else bad will happen.

I was diagnosed with cancer December 3d last year and even before I got the definite diagnosis I called all my friends and family to tell them the news. Since my treatment and subsequent tests were done at MD Anderson in Houston and I lived in New Mexico, I am glad that I had a long distance support network during the difficult times while waiting for surgery and during even more difficult post surgerytime. My husband e-mailed everyone with all the news periodically and the prayers and good messages I receivved were so important to me. I am still only 2 1/2 months from surgery (removal of the lower R lobe and lymph nodes) and still away from home and living in temporary places, I am so happy when i get a call or mail from a friend or a relative. There were some people who just could not handle the LC issue at all but a lot of others were so generous with their attention, good wishes and prayers that it made my recovery that much easier to take. I still feel like a freak when I go out in public and just am surrounded with "normal" people and I feel really depressed about what is happening to me. I don't want strangers to shun me because of what I had but I do crave and appreciate the support I received from my friends. Nothing is easy or clear now.

The surgeon and the oncologist at MD Anderson Cancer Center have scheduled me for xray exam every 3 months and I demanded that they also do a CAT scan (which they did not think I needed) at my first 3 month check. At the time I was diagnosed my cancer was not noticed on the x-ray but was visible on CAT, so I cannot imagine why they would not want to do CAT especially since my insurer has no objection to it. I was also very surprised that no further treatment was suggested at all. MD Anderson was rated best in the country for lung cancer treatment so that is why I went there. I sometimes wonder if I did the right thing. They were great for the hospital stay but the follow up is very poor, even when I complained about severe shortness of breath they sent me home to deal with it. turned out I had so much fluid I needed a tap and a drainage put in. Does anyone know of a diagnosticmethod which uses a special green light in conjunction with bronchoscopy exam which shows even the most miniscule cancer cells during the exam?

I am 59 former smoker diagnosed January with NSCLC (1 1/2 cm squamous cell carcinoma stage IA). I had a lobectomy of my lower right lobe, bronchoscopy both sides and removal of lymph nodes. All tissues except the nodule were clean and the doctors at MD Anderson Cancer Center felt i needed no further treatment. My surgery was february 5th of this year and since then I had been in the hospital 3 times, twice with fluid in the lungs and once with bronchial spasms that the doctor thought were due to allergies and or bronchitis but was not really certain about. I still have bouts of caughing that scares me to no end (caughing was the reason I had a CAT scan in December which detected the tumor) and I am really scared that it may be comng back again. I am still in apin from the surgery and although the doctors tell me I am doing well I have no energy and feel really lousy. Is this normal? Am I just being a baby? I have no way of determining how well I should be feeling by now (2 1/2 months after surgery) and what symptoms are just normal and what i should worry about. Reading a lot of the postings tells me that you all are so brave and non complaining--- I just wish i could know how everyone dealt with the surgery and the recovery and the daily fear I seem to be carrying all the time. Gyongy