4 years searching for a dx - when found, stage 4 lung cancer

[MelanieLR]

February 2005

I'm starting to feel that strange brain tumor feeling again. I'm aslo feeling quite a bit of new pain in the area of the lungs, digestive system & joints. I have an appointment on 2-21. I guess I'll go ahead & have him do the scans but I really don't think I'll go back on treatment. I've only been off the chemo for a little over a month & I can't see doing it again this soon. Frankly, I don't believe I'm strong enough right now to withstand any more treatment.

January 2005

For the a little over 4 years now, I've been trying to find out what is wrong with me. I think it all started when I went to the doctor complaining of shortness of breath & coughing. I was given a chest x-ray & breathing capacity test. I was told that I had a very mild case of asthma & sent home with a prescription for an inhaler. Then there was my undiagnosed "episode" at work. I suddenly felt like I was disconnected, like something in my brain was not transmitting properly. I was confused, dizzy & my speech was slurred. I was taken to the ER where they did a CT scan & told me nothing was wrong. While those three symptoms slowly improved, I was now getting severe headaches. They did another brain CT & again told me nothing was wrong. This time they sent me home with prescriptions for anti-depressants & migrane medication.

As I look back on all the complaints I've been to the doctor for in the past 4 years, it astounds me. First of all, I was never the type of person to go to the doctor unless I thought I was dying. Now here I am going to the doctor or for some test every week or two. Anyway, back to the history of my non-diagnosis. Next, I was having feminine hemorraging. I was told that I had severe endemetriosis & many large cysts on my ovaries. I was given a total hysterectomy & told that everything was benign. When I found a lump in my breast, they did a lumpectomy, said I was fine & doubled my anti-depressant.

A couple years prior to all this mess, I sustained a rather serious spine injury at work. Since my company had been fighting workman's comp. it was around this point in time that I finally got an approval to have the surgery I needed on my spine. While this injury doesn't have anything to do with the fact that I have cancer, I find it rather ironic that the PET scan shows advanced cancer in the exact location where they were doing the surgery - they didn't see this? I've had numerous lumps, parts & cysts removed & told that they were all benign.

I complained that I was having a hard time swallowing, they upped my anti-depressant. I complained that my abdomen was hurting on the lower right. I was told after a CT scan that my parts weren't in the right place & that it was diverticulitis. They did a colonoscopy, removed numerous leisions & said everything was fine. A couple of weeks later, I had to have an emergency appendectomy. Guess what - it was right where it belonged, on the lower right side on my abdomen. Naturally, again they told me the biopsy was negative.

One day I felt a pea sized lump on my neck. I set an appointment with my doctor for the following day. When I woke up the morning of the appointment, my pea was now a very large grapefruit. The doctor sent me for a CT scan. I was told that it was some sort of viral infection & sent home with antibiotics. After 2 weeks of taking antibiotics, my grapefruit was now a volleyball. I went back to the doctor & was given a needle biopsy. A week later, I received a call from the specialist who told me it looked "suspicious" for adenocarcenoma. Naturally, I knew that "suspicious" meant I had cancer because there is no way they could identify the specific type of cancer cell if it wasn't there.

I called the oncologist who treated my Mother (she passed 9/8/03), & he sent me for CT & PET scans (I can't have MRI's because of an implant I have in my spine). When I had my appointment with him to discuss my scan results, I was told I was in very advanced stage 4 cancer. It is assumed to have started in my lungs with mets to the brain, liver endotracheal space, thyroid, breast & many bone mets including the L4 in my spine. That is exactly where the electrical lead for my spinal implant is attached. There is also cancer truoughout my entire lymph system.

At this point I have been through 6 rounds of very aggressive chemotherapy (carboplatin & taxol) & Gamma Knife Radation Surgery. I'm told that I've probably reached my maximum benefit from this chemo. If later scans show new growth, we might be able to try a different mix. I've been off the chemo for 3 weeks now & still waiting & hoping for a point in time when I will feel a little better. Truthfully, if this is as good as it gets, I won't persue alternative chemo. I went through 6 months of agony & I feel no better now that I'm off it than I did while I was on it. Maybe it takes more time but even so, at best the doctor believes that this chemo only bought me 6 months or less. Do I really want to spend more than half the remainder of my life in that kind of misery?

May God bless all of you & hold you in His loving arms.