I have been intending to post for several weeks, but information kept trickling in, and I kept waiting for just the last little bit so I could publish full disclosure, rather than dragging it out over several posts. As well, I was going through a stress-puppy phase, and I tend to withdraw rather than sharing when I’m feeling that way.
As my neurological-type symptoms increased in severity (inability to concentrate, blurry vision, extreme tiredness, memory lapses), to the point where I didn’t feel I could drive safely; and it was taking too long (in my opinion) to get in to see a doctor; I started thinking about what had changed around the time I first got the cold, and never really got better afterwards. One of the things that had changed was my prescription for Ambien – by early May, it was no longer helping me sleep through the night, and just before my prescription ran out, I had an incredible bout of insomnia that lasted for several days. I hadn’t been taking Ambien every night (and sometimes not for weeks at a time), nor did I take the maximum dose every time I did take it, because I was concerned about addiction. Halfway through this bad patch of insomnia I ran out of Ambien, so the doctor prescribed the controlled release form of the drug, Ambien CR, to help me sleep through the night. It took several days for the insurance company to approve the prescription, so the insomnia got worse, while I tried different over-the-counter items and tried dropping caffeine to half of my usual level, and then half again.
Right about the time I started using the Ambien CR, I developed a major cold, but I did start sleeping better. The cold finally went away but I continued to have the chest symptoms, and the neurological symptoms started to get worse, as well as the tiredness. This was what prompted the oncologist to get the CT scan, MRI scans, and the PET scan, which identified the enlarged chest lymph nodes.
So here I am nearing the end of July, waiting to get in to see a doctor, and things are getting worse. Noting the conjunction of the cold and increasingly bad neurological symptoms with the start of taking Ambien CR, I checked out the clinical trial data for Ambien CR on the manufacturer’s website, and it turns out that every single symptom I had showed up under the Adverse Reactions for this drug. Again, I didn’t take it every night and didn’t take the full dose if I could avoid it; so it seemed like it shouldn’t have been any worse than the plain Ambien. However, I stopped taking it, and over a period of three days, saw radical improvement in my ability to concentrate, the blurry vision, the memory problems, and even some of the tiredness and shortness of breath reduced. Yay for me!
Unfortunately, it didn’t really help with the chest symptoms.
The update on the enlarged lymph nodes in my chest:
My oncologist referred me to a pulmonary specialist, who decided that he wanted another biopsy of the lymph nodes, only this time they would go down through my trachea (windpipe) rather than through my esophagus; and into my bronchial tubes, poke down into my lungs and take samples; and then through into the lymph nodes again.
This latest biopsy was done on August 1, and was again done using the conscious or twilight sedation. The specialist said that if they found any of the granulomatous inflammatory cells in the lungs, sarcoidosis would be a firm diagnosis; but if they were only in the lymph nodes, it would only be “likely” that I had sarcoidosis; and if they didn’t find anything else (he mentioned cancer again – whoa! I thought that had been ruled out! and he mumbled something about “sampling error” – reducing a possible misdiagnosis from the first biopsy to a statistical anomaly), they would presume I had sarcoidosis, and treat it accordingly; which in my case, because my symptoms were more than mild but on the low end of moderate, meant doing nothing.
This week, the specialist called with the results – nothing in the lungs, nothing but granulomas in the lymph nodes, so good news! I most likely have sarcoidosis, which means I get to wait for it to go away on its own. Woo-hoo! I can hardly wait. Really.
However, I do have other news that isn’t nearly so good. I found a lump on my left breast (well, what’s left of it, anyway) in June, and after having an ultrasound and a mammogram, was scheduled for a biopsy on July 31. The results of that biopsy are that the breast cancer has recurred.
I met with my surgeon late this past week, and although they’re still awaiting the final results on the tumor characteristics, it does appear to be a more aggressive type of cancer. Still, because it was found so soon, and because it is so close to my having finished chemotherapy and starting the anti-hormonal treatment, she and the oncologist are sure (now that two biopsies have shown no cancer in the chest lymph nodes) that it hasn’t spread.
I have a lumpectomy scheduled for August 22, and it will be an outpatient procedure – I will arrive in the morning, be under conscious sedation for the surgery, and go home in the afternoon. I won’t be able to do any heavy lifting for two weeks, but I expect to be able to return to work the following Monday.
Radiation is definitely going to happen this time around. When the oncologist called with the cancer news, he indicated that radiation was a sure thing, and I started worrying about what that meant in regards to my implant – dang it, the left one is the one I like! The surgeon reassured me that the implant can stay in, and that although it will change the feel of it, it won’t explode, or boil dry, or anything like that – whew! I had pictures of volcanoes running through my head. . .
The surgeon felt that chemo was pretty much guaranteed, because a recurrence is nearly always treated aggressively, and especially so since this cancer appears to be more aggressive itself. I haven’t yet spoken to the oncologist, but even though I don’t *want* to go through chemo again (hey, my hair is already in major ‘fro territory – a second round of chemo might turn it into barbed-wire spiky steel-wool curliques), if there’s the smallest likelihood that it will help me beat this, then I absolutely will insist on it. Chemo goes away; dead doesn’t.
Oh yeah – I don’t have tuberculosis.
Pity the Cancer! 