My pulmonologist has been great. In fact, he’s the one who discovered my lung cancer. My primary care doc, who I’d seen for 20ish years — minus the several years I lived in New Hampshire — had dismissed the cough on the premise that I’d always had a cough. But the pulmonologist sent me right upstairs in the hospital where his office is to get a chest x-ray. It turned out there was a large mass in my right lung. So my new PCP treated me for pneumonia while the pulmonologist put me through a battery of tests and scans. Hence: cancer diagnosis, stage 3 adenocarcinoma of the lung, June 2018. I’ve had three surgeries (one removing almost half of my lung), one and a half rounds of chemo (eight treatments total), and numerous scans and x-rays. I’m mostly bald, way overweight from medications and lack of exercise,
It’s been a long haul, and to tell you the truth, I’m tired of it. I’ve been chastised on Facebook (though I’ve gotten a lot of non-judging support as well) for not being grateful enough, or positive enough, or whatever enough, and I’m tired of that too.
I quit smoking 40+ years ago but there are a lot of other possible contributing factors: my parents were both heavy smokers when I was a child, my first husband was a heavy smoker, and as an artist/designer I’ve inhaled all sorts of fumes, solvents, aerosols, photo developing fumes, and sprays all of my adult life. Or maybe it was just chance. Who knows.
I spent a couple of days in the hospital last month, after Sweetie took me to the ER. I was having trouble breathing (which has been a problem all along. but that night was the worst). They did a whole bunch of tests, of course, and sent the results to all three docs. That got things moving. I asked the pulmonologgist to step back into the case, and be my second opinion.
So now I’m in sort of a medical limbo — do I have metastatic tumors, or non-malignant lung inflammation? The latest PET scan — ordered by the oncologist but suggested by the pulmonologist — was interpreted by a radiologist to show no malignancies, The oncologist agreed to take me off the second round of chemo (which was horrible) and prednisone, at least for now. I have yet to see the pulmonologist to discuss next steps. His office rescheduled for next week. After that I see the oncologist.
Fortunately, I have a very supportive spouse. I don’t know what I’d do without him. And my friends have rallied ’round in all sorts of ways.
I’m feeling better without the chemo and prednisone, still recovering from those. Still weak and breathless. Haven’t made much art, either. Lots of intentions…
It all started with my left eye, which for most of my life tracked upwards and to the left, relative to my right eye, and is also my dominant eye. Recently the misalignment became no longer manageable with prisms in my glasses lenses, and my optometrist feared that I was in danger of losing sight in my right eye as my brain ignored it in favor of the errant and dominant left. My husband knew someone to whom this had happened. Hence, the referral to a strabismus surgeon and subsequent muscle surgery on the left eye, and then the cataract surgery / lens implant in my right eye (by another specialist) to clear up the right eye’s vision.
But my right-eye vision didn’t appreciably clear up, and the eye began showing misalignment patterns it hadn’t before, while continuing to lose visual clarity. The surgeon who had done the strabismus surgery (call him Dr. S, for Strabismus) noticed this first, and said I had to get an MRI right away. I’m claustrophobic, and flew into a panic, so he changed it to a CT scan. Those results caused him great concern, and he insisted I see a neurologist. In turn, I insisted that I see the cataract surgeon (call him Dr. C, for Cataract) first, since he’d done the surgery on that eye. Dr. S’s office set up an appointment with a neurologist to follow my appointment with Dr. C.
The next week I saw Dr. C, who said that he’d received neither CT results nor communication from Dr. S. When C’s office finally got the results faxxed from S’s office, C said I didn’t need a neurologist — I needed a retina specialist. His office set up an appointment with a retina surgeon (call him Dr. R, for Retina), and I cancelled the neurologist appointment. Next I saw Dr. S again; he was upset that I hadn’t seen a neurologist, and said that Dr. C didn’t understand the issue — “you two have to TALK to each other,” I said — but he agreed that I did need Dr. R as well (“a wonderful surgeon.”). He dismissed my own theory that my brain was simply trying to recreate the former pattern of misalignment. Meanwhile, he pointed out, my right-eye vision was still in decline. S’s office made me an appointment with the first neurologist they could get me in to.
…who, as I soon found out, had really unfavorable reviews online. At wits’ end, I heeded my husband’s advice and contacted my GP (Dr. G, for General practitioner), asking for opinions and guidance. Everyone was supposed to be sending him exam and test results but of course they hadn’t. His office assistant immediately swung into action — got all of the test results for him to review, and set up an appointment for me with a neurologist to whom they refer. Dr. G didn’t see anything abnormal in the CT scan, but felt I should go ahead, see the neurologist and get an MRI, just to tie up the loose ends. I felt so relieved with a knowledgeable but neutral physician involved, someone who’s known me for years.
So I saw the neurologist (Dr. N, for Neurologist). His practice’s office seemed to be in a state of chaos. In contrast, the doctor himself was calm, authoritative, and informative. My husband and I were impressed with him, if not with the practice. After an extensive interview, health history, reflex checking, pin-pricks, and eye-tracking, he said that as far as he was concerned, there was nothing wrong with my brain — that it was just trying to replicate the former misalignment pattern. (Yes!) But he wanted an MRI just to be sure, and agreed that I was in danger of losing sight in the right eye. He issued orders for an open MRI machine, due to my claustrophobia.
Except that, when I got to the hospital radiology department a week later, Dr. N’s office hadn’t sent the order. After calling N’s office for more than an hour and leaving messages, the hospital got a verbal approval from one of the other neurologists in the practice… but not for the open MRI. I took a long and anxious look at the closed machine, discussed it with the radiologist, and made an appointment for the next weekday in the open MRI… by which time N’s office STILL hadn’t faxxed over the order. But the test was finally done in the open machine, and with a dose of Xanax it wasn’t too awful. Sort of like I’d imagine a Philip Glass concert, actually, but with loud percussion.
I haven’t heard from Dr. N’s office since that first consultation — neither the promised test results nor an appointment for a follow-up. Instead I got the “nothing wrong” results from Dr. S when I saw him next. His office had to call N’s office to get the results, of course. By then I’d seen Dr. R and was scheduled for surgery in Syracuse, 60 miles up the road.
So. After a two-week delay on Dr. R’s part, and rescheduling, one morning Sweetie and I headed up the highway at the crack of dawn.
The Syracuse hospital was wonderful, and the surgery went well. The car was parked for us at minimal cost. All the staff we encountered were cheerful, friendly, polite, helpful, and seemed very involved in their jobs. Everything was explained, all questions patiently answered. I was 15 minutes late into surgery, but was visited separately by Dr. R, by the anesthetist, and by the surgical nurse, before going to the OR. I suffered no pain or discomfort and they dealt cheerfully with my anxiety. (I babbled, I think.) It was “twilight” anesthesia, but I was given enough drugs to make it interesting rather than grisly, and throughout the hour-long surgery, someone held my hand. Gluten-free breakfast back in the hospital room followed my stint in Recovery. We left for home that afternoon, then returned to Syracuse the next day for an all’s-well post-op. My right-eye field of vision was was mostly filled by a large air bubble inside the eye, part of the post-operative healing process.
Each day since surgery the bubble has been smaller (if more annoying!), and my vision has become clearer. Today, ten days after surgery, the bubble is finally gone. Vision in that eye is still blurry and slightly distorted, but although Dr. R says it’ll be “months yet” before healing is complete and vision stabilized (and I can get a new, correct lens prescription!) it’s evident that my brain is once again using both eyes. I’m ready to drive again, I think, and most important, ready to paint again — and hoping for no more eye surgery!
Many, many thanks to my loving and supportive husband, and parents, and to all the friends and family members who’ve followed my saga piece-by-piece on Facebook.