My experience seems be a total tale of confusion and I have often felt like Alice down the rabbit hole, except with no happy ending. I was always a fairly healthy person in the big picture. Tons of allergies, very susceptible to colds and flu, in the hospital only 3 times, pneumonia as a child, c section, and appendicitis in my 30s. Never any major problems.
In 2008, I had a pain in my right shoulder, this in itself was not unusual, I worked in an office. I was always using the phone and the computer, my shoulders had always been weak. This pain refused to simmer down, it was intense. My husband finally got me to agree to go the dr. they did and xray and sent me to the hospital for another test. I was not getting any real results, it was after 6 pm, they stuck me in a room. Then a doctor came in and started harassing me about how i was killing myself, I had lung cancer, telling my husband to be quiet I had to confess in order to take the right steps. I finally left, I felt I could just get the results the next day. They were not happy, they wanted me to stay, it was now after 9. My husband took me to get some soup, and some overnight things. I could not make it through the food, I was a wandering zombie in the store. I returned to the hospital, my fever was over 100, and an older, apparently more knowledgeable emergency rm doctor came in. I stayed.
The next day a pulmonary doctor came in. He did a biopsy, through my nose, did some scans. he stated I had an infection on my lung sack, not in my lung. None of the obvious reasons came into play. Treated me with an antibiotic, sent me home. I had to have regular CT scans, 3 years later, right when we were going to cut back on the scans, it grew. A whole mm. The doctor wants it out, immediately. I agree, an appt is set up with a surgeon from Baltimore, Univ of MD. Then I get a feeling other things should be done first. I don’t know what, but something.
The surgeon did a punch biopsy using a scanner to help locate the best spot. That really hurt. Results, I had a thymoma, size of a kiwi, thought it might have some cancer. Since this was one of his “niche” markets he would remove it. This was in November, 2011. I had time. Well, since it is cancer, and it is supposed to make me lose weight, which I had not as yet, can we wait a few months. No, not that long, I had a couple weeks. One week in hospital, one month at home recuperating. I researched, found little, terrified myself, gave up, just kept feeling that maybe this was not what should be done first. Called mom, to come up and help out. Figured we would have a nice long vacation. Plus hospital was over 2 hours from home and there were pets and things that needed caring for.
At 54, 11/21/11, I went in at 5:30 am for my operation. I had passed all the physicals and was slightly above average in all tests for my age as an office worker. I was in surgery for 13 hours. Team called back twice. Nothing has ever been explained, no notes that I have been able to get match. Turned out my tumor was the size of a grapefruit or small melon. It had become aggressive and begun to invade local entities. I lost right side phrenic nerve, 17% of my upper and middle lobe on the right lung. I believe 3 lymph nodes, and my heart muscle was scrubbed. He felt he was not able to remove between 5 and 10% from the heart. I spent over 3 weeks in various intensive care units. I had a tube stuck down my throat to breath for over 2 weeks. I caught Pneumonia. I was really out of it most of the time. Some things done were almost unspeakable. There is still amazing cruelty even in such large hospitals! Nurses kept murmuring (I think they knew I could hear) that I would be so much better off with a trach. Then the breathing tube valve began to stick. It was truly an awful existence. Apparently there is no rule that guides them to give a new one, and i had been on mine too long with a lot of congestion sticking up the works. So I wrote on my wrist that my whole family approved a trach, and next time it happened. It happened every few minutes, I quit breathing. As far as I can tell I died, had an experience and everything. I got my trach, there are about 3 versions on how that came about. 1 week later, I was sent to rehab, because they needed to make it so i could speak and eat, supposedly that would go faster in rehab. It did not. Happened a week later, the next day I went home, 12/24/11. The surgeon said that mine was A/b. B because it had begun to invade although it never left the thymus gland the gland just sort of sent out fingers and laid on things due to size and I may have had it as long as 20 years going in and out of dormancy.
My one month at home turned to 3 months. I had 28 sessions of max radiation the month before I went back to work, because I had to. I went part time, I kept trying to increase my hours, but I could not. i ended up going on disability 18 months later.
I tried desperately to get my oxygen usage down. it was 2.0 resting/3.0 moving. I lost 30 lbs, body has a difficult time going lower. I did more than one session of physical therapy. Nothing seemed to help. The diabetic symptoms I had gained went away. Then I had an 8 mm kidney stone. The diabetes was back. After I was put under to destroy the stone, things never went back to normal. I then suffered from pulmonary hypertension for a year, which they did not tell me. They tried to do a gas test around my heart. Even though I was not supposed to be on my back for more than 1/2 hour and you have to watch sedatives. The heart doctor did both and nearly lost me. Now on my second pulmonary doctor, him and the heart doctor decided I was terminal and then my second pulmonary doctor retired. That day though he did the best for me that he had ever done. He decided as a last ditch effort I should see an expert in Christiana, DE.
The new doctor saved my life. He put me on an AVAP machine. A special ventilator that breathes for me at night. I do not breath deep enough to rid myself of carbon residue (when I think about it, I do not believe I have ever breathed deeply). For the first time in 3 years, I could read! He also wanted a surgeon to tie down my right lung. As I sat in the hospital waiting for the surgeon to come, it was not a planned surgery so it was on a first come first serve basis. I began to worry, more and more. It did not feel right. Maybe it was the easy peasy the surgeon had used, I do not know, but every hour I was more and more against it. Finally after a full day, he came in and stated he was sorry, I would have to reschedule for the following week, but now he was not very positive, he just thought it was the only hope I had. I left, never to return. Since then, my fourth pulmonary doctor and another who had worked for sloan kettering have both stated that there would have been too much scar tissue and it was too old for that operation.
Now, I am on 2.5 liters resting/6.0 liters moving, though I often make it on less. I use my ventilator every night, and my current pulmonary dr has stated that there was never a hope. The good news is I no longer have to feel guilty that somehow I was failing and she says I am doing much better than many in my condition. The bad news is my right lung is up around my arm pit, and from all the scans, xrays, and radiation, my left lung is not well off either and my stomach is up under my right lung. Lord forbid i should overeat.
My thyroid is now shot, but I have severely reduced my metformin intake, should be off in about a month as the diabetic symptoms are almost gone. This year for the first time, I have not been admitted to the hospital, and it will be 5 months between my last and next doctor visits. I have no hypertension symptoms, as long as I don’t get a head cold. Although last year my body decided it would delve into the world of arthritis ( it is unending and I truly do not think this is my body) I am currently on a medicine that helps.
If you are diagnosed with this disease, go to a regular oncologist, start there. My surgeon should have applied chemo first according to studies put out by his own institution.
My life has been altered greatly. But I am still here, I am still, well not kicking, but stumbling along and I still get to go out and see the world every week. So there is much to be thankful, just don’t think about what is no longer possible and life is good.