Lorraine's Story
April 2003
I am 66 years old widow (12 years); I married at 19 years old. My mom died of cancer at 66 years old and my dad died from emphysema and it's complications when he was 51 years old. They had 8 children, 6 survived, three boys and three girls. All my siblings have diabetes, but I do not. My mom was diabetic lost sister at age 43 from diabetes. Husband was also diabetic and died from its complications and bad heart.
I have one son and two grandchildren, one grandson and one granddaughter, my granddaugher is 17 years old and grandson will be 16 in a few weeks.
I was born in New Britain, Connecticut and moved to Southington, Connecticut after my marriage (husband was from there). Worked hard in the pizza and sub shop that we owned in Southington, until husband got to ill to run it. We sold it and it is still in operation today. Six months after selling business husband passed away.
I was 55 at the time could not collect social security benefits. I lived off income from sale of business and worked part time at a sub shop in town. I had a big 9-room house that we had for about 10 years. That my husband bought for investment, so that when we retired we could sell it for profit and travel and get small place perhaps in Florida as we did not like the cold and snow in Connecticut. But things don't always turn out as planned.
Grandchildren were only 5 and 6 at the time and were very close to us. We were the only family they had around. They spent a lot of time with us and then myself when husband died. They had a hard time with his passing. Well just kinda gave my all to them, not thinking about myself down the line.
I had it with the snow and cold in Connecticut and I put my house up for sale and came to Florida in February 2002. Bought a small mobile home. I have a few good friends that live near by. We have been friends since childhood they are good people, I stood up for their wedding.
Was just going about settling in, I had some congestion and took over the counter medication, but it was not getting better. I was getting out of breathe, thought it was the change in area and weather. But I kept getting worst, so I went to the walk in clinic here to get something. They ran a blood test, a urine test and chest x-ray. The doc came in and showed me the x-ray; the left lung was completely white. He said this is not pneumonia it is serious. I did not have a temp. He said I had to go to the hospital, right now, by ambulance. They set up for a lung doctor to meet me there, they admitted me and did some tests; they said I had a total collapse of the lung. It would have to be drained, they took out two gallon bottles of fluid checked the fluid which showed cancer cells.
Next day did a biopsy of the lung and confirmed it was cancer. They did more tests and all were the same. Had to have a chest tube put in for 5 days in the hospital as fluid was back it was NSCLC stage three then he called in the cancer doctor who staged it at four. Had to have a chest tube put in as fluid kept building up. My white cell count was 29 norm is 5 to 10, would not let me go home till it came down had me on liquid antibiotics by injection 600 mils every four hours.
I came home and had to go back to the hospital, to have it drained again. Then they put this talc powder in to seal around the rim of the lung so the fluid doesn’t build up so fast but it did not work for long. They said because of where the tumor was and the fact it is producing this fluid surgery and radiation wasn’t an option the only thing available to me was a round of chemo. Taxol and Cisplatin it is used for people who have ovarian cancer only kind for me to try. Told me there was no cure only temporary remission with chemo. I was not going to go for it, but I guess like most, we all want to live, so we try it. Told me my general health was good if it was not they would not even considered chemo.
Had 6 treatments one a month for 6 months. Not a walk in the park. Had some nausea and was very tired all the time. I had to get shots in the beginning, as I was anemic. I have nerve damage to the tips of my fingers and my toes, numbness that did not go away after chemo; it is caused by the chemo. Have lost all my hair during treatment. It is terrible as it is so hot here and to wear hats and kerchiefs was a pain. My hair is starting to come back now first my eyelashes then my eyebrows now i have about a eighth of a inch of hair on my head and it is coming in black and gray! I had auburn hair before, the doc says this happens a lot…different color and sometimes it comes in curly, but mine so far is not curly. Finished my chemo December 23, 2002.
I had a pulmonary function lung test and lung capacity is at 42%. I know for sure can't do what I did before. Did not have any pain, till about three weeks (March 2003) ago then started to have pain in the upper back and lower rib cage on the left side where the tumor is. It kept on getting worst so called doc had scan of chest done showed no change from scan in January. He said no better, no worst, the same. I had a body bone scan done was negative for spread. They did liver and brain scans, also with no sign of spread. The tumor keeps producing fluid that is in the tissue and causes pain. Have a breathing machine I go on daily, but it does not help all that much.
Gave me a prescription for pain that had codeine in it. I took, as they said for 4 days, then I started to have a problem with breathing, I felt my throat was closing in and had a little problem swallowing and also coughed up a little blood in with the mucous. Stopped the pills and have not had the problems I just described, but the pain is terrible. I have been taking Tylenol but not much help. I have a hard time falling asleep, can't find a way to lie without the pain. Sitting up is okay, but I still can breath okay, but on my side but the pain is terrible. My appetite is good for the most part, some days I don't feel like eating, but it is okay. Had blood test done last week and counts look okay, a little anemic but not bad enough for shots is what they say. Although not easy, I have been able to take care of my home and cook, go to the market and run errands. I try to space them out so it is not too much in one day.
September 26, 2003
For a few months everything seemed to be going well, I felt pretty good. All the blood work was good, my breathing was okay, and then I started to have pain all around my left lung area and numbness around the lung.
I was sent to a neurologist, he did a nerve conduction test (which is extremely painful). He gave me a shot of cortisone under the breast as he felt there was a lot of inflammation in that area. It did seem to help a bit.
I developed extreme edema from the toes to the knees. After a three-week course of diuretics, (that did nothing) I was sent to a vascular doctor. A scan showed some blood vessel blockages in upper thigh on my left side. It seems so strange that everything that comes up is on the left side. He felt it is because the cancer compromised the flow of the lymph fluid and the body just can't get rid of the fluid.
A pet scan was done, which showed two small lesions in the liver. Because they were only 1cm the doctor thought they were too small to biopsy.
I started chemo, a different kind then the first round. Because they wanted to zap the cancer before any more spread, they increased the chemo to once every two weeks instead of once a month.
It has been no walk in the park, it seems I am sick most of the month and I still have the edema problem that makes walking painful. They put me on Coumadin to keep the blood thin as it is possible. The pulmonary doctor put me on oxygen at home at night only (for now) as my blood gases were not what he wanted to see. It does seem to help. Also increased the morphine to control the pain. Have lost 23lbs in a year, which is good considering all. Although a little slower I still manage to take care of my home and myself, run the errands that I have to and go to my doctor’s appointments. I guess it is the stubbornness in me that won’t give in to this monster-cancer.
My doctors and some of my friends have given me the nickname of survivor. I had been given a year with treatment maybe six months without and it is fifteen months now, so I feel I have won, even if it is only by a few months! So far I just keep saying, “I will beat this monster!” It keeps me going. I have been told that I am stubborn, I guess now being so has helped.
It is frustrating when the mind wants to do so much but the body won't let that happen. Had appointment with oncologist today (September 26, 2003) and he ordered a scan for next week to check to see if this round of chemo has done anything to eliminate those lesions on the liver. The last scan showed a greater than normal uptake in the colon and the fact that I have some pain in that area there may be a spread there. Am praying that is not so.
October 8, 2003
It is so frustrating when you have the top doctors in there fields of medicine and no one has a answer as to what is causing this extensive edema. The oncology nurse says it could be from the chemo, but she is not sure as has not had anyone else who has had this much edema as a side effect. The oncologist says it is from the chemo, but after the first round of chemo I did not have any edema at all and this edema started 2 months before the second round of chemo. The pulmonary doc feels the cancer is compromising the lymph nodes in the abdomen. At the first meeting I had with the vascular doctor he was also baffled, as the reports he read from all the scans and ultrasound did not pinpoint where the problem is. By evening I can hardly walk as ankles are so swollen. My legs feel like they weigh a ton. Have done the whole round of testing and treating it and nothing has worked.
The scan and no change in tumor in lung but 4 lesions in liver showed up. I was put on six more sessions of chemo (taxetore). It was very rough as blood counts went so low that I had to have shots everyday of nurpogen.
2004
The next scan in January 2004 showed two lesions were gone and the other two very small. The oncologist put me back on same chemo for 2 more sessions to knock the other small lesions out. It worked as my last scan showed lesions all gone in the liver, tumor stable, and a small plural effusion showed one lung. He decided to give me a 2-month break from treatments and let the body see what it can do.
Went for my checkup with the pulmonary doc for a PFT (pulmonary function test). Test showed a diminished lung capacity from the last test. I thought it would be different, as my breathing is more labored than it had been. I now use oxygen anytime it is needed, not just at night, as had been. I use portable tank when I go out to doc appointments or to the store, etc. Will now just wait a few months for the next scan and see where I go from there. With this monster cancer it is one-step forward three steps back.
Well it is April, 2004 time for a CT scan. The scan showed liver lesion, vague hardly seen, plural effusion from small to moderate and less air capacity in left lung. Doctor decided to put me on Iressa (it is a chemo taken in pill form) and not as potent as other chemos. Went to pick up the prescription almost had a heart attack it was $1,900.00 for 30 pills. Went to doctors office told them, “I cannot do this again!”. They filled out a form and sent it to the drug company for hardship aid and I was approved to receive up to 12 months for free. Is this a crime or what? These drug companies knowing people need these drugs so they can call the shots. It is not as potent as the other cancer drugs but still has some drawbacks.Anyway the doctor sent me to the pulmonary doctor with the scans as to his insight of things he ordered a PET scan in June. He said some things he hoped it would clear up some of what he saw in the CT scans If not he would do a bronoscopy to get a piece of the lung for biopsy. Left lung is almost completely a white out. Does not feel it is from the plural effusion alone. Did a PFT test and breathing capacity is at 28% (not to good).
It is so hard now just doing the basic everyday things. Was told to use oxygen when I felt is was needed but not to increase the amount yet does not want to push it want me to use the right lung as much as I can. Right lung is perfect. So have to keep using the nebulizer to keep the lung in good shape as he put it.
Continue to use the pain meds and if I need and I can increase them. Do have a lot more pain now all on the left side. Want me to have a colonoscopy but I have been holding out on that found them to be very painful. I feel the CT scan and the PET scan should show if there is something there, it shows all the nodes. So on and on it goes. Will have to wait for the next chapter.
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