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Long-awaited: and… action!

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Stella
Stella is a constant source of joy.

 

So – where were we?

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…

A metaphorical kick in the teeth

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Entrance to Winterthur, in June

Continuing from my last entry… With that first round of Prednisone I felt a lot better… until I tapered off it, and my breathing worsened again. A further CT scan showed the spots, or nodules, were still there in my lung. So I was put on a second round of the steroids, with the same results. But this time the scan showed a proliferation of the nodules, some outside the lung. That was the kick in the teeth (my dad’s phrasing). I’d been apprehensive about the scan results, but really expecting better.

It could still be side effects of the Keytruda — they can continue for months — but the Prednisone isn’t knocking it back. Or it could be a rapid metastisis — atypical of adenocarcinoma, but a possibility nonetheless. So the oncologist is putting me back on chemotherapy, on different drugs than the last round of chemo: five treatments, three weeks apart.

This round may be rougher — the list of possible side effects is daunting, and, as he pointed out, my health is not as good as it was the last time around. I run out of breath very easily, and my breathing is often labored. It sucks. It sucks for me, and for Sweetie. I’m struggling physically, and we’re both struggling emotionally. The death of Sweetie’s mother in June, at age 97, although expected and in some senses a relief, surely didn’t help matters.

Fortunately, a dear friend who’s a psychotherapist has connected me with a colleague of hers, and this is turning into a good and helpful relationship.

Chemo starts sometime in the next week. I’ll check in, in a week or two, as to how it’s going.

Almost six months on from the last installment

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Well, I have lot to summarize, for 5+ months of healing!

The surgeon removed the top third or so of my lung in the thoracotomy, and the pain following that was pretty considerable. In pushing a rib up and out of the way to get at the lung, they’d injured the rib, and a lot of the pain stemmed from that. I went through a couple of rounds of pain meds, getting really tired of feeling confused and out-of-it all the time. I used them all, but never felt a craving for more, thank goodness! Scary stuff, but I’m thankful I had it when I needed it.

After I’d recovered some from the surgery, my oncologist started me on immunotherapy (Keytruda), an infusion every three weeks for (for starters) five treatments. I’d apparently tolerated it well during chemotherapy. Primary side effects were flu-like: fatigue, intestinal upset, aches and pains that were indistinguishable from surgical side effects.

Towards the end of the five treatments, a new CT scan showed new small spots on the remaining lung, though also a diminished lymph node. The radiologist who read the scan was concerned that the new spots might be a metastisis — a spreading of the original cancer — but the oncologist disagreed. I was still very short of breath, and he believed the spots indicated lung inflammation caused by the Keytruda. I’d read that it sometimes causes autoimmune problems by revving the immune system so high. So he stopped the Keytruda, and started me on a course of prednisone (a steroid). Bingo! It took a few days to take hold, but now I’m breathing well and feeling much better as I taper off the four-week steroid treatment. Up next is another CT scan (chest only, as the abdominal scan was all clear last scan), and a continuation of the Keytruda.

The pulmonologist has declared me “a success story,” and I’m feeling optimistic. Trying to move a little closer to normalcy by sleeping less, doing more. I’m also finding out how much anxiety and fear I’ve bottled up over the last year… as is Sweetie. Feeling a little out of control, emotionally, so it looks like it’s time I find a support group or therapist. It’s so unfair to pile it all on Sweetie when he’s having his own backlash problems. He’s been with me every step of the way, even when I acted less than grateful.

But I’m so much better. Such a relief to be able to breathe again, to start learning how to do housework again, to go shopping again, and even to make art again. I’m way out of shape, but now I can even fathom working on getting fitter. Wow.

Thanks so much for your support, and cards, phone calls, emails, FB messages, and all!

And always, always, thank you to my Sweetie.

Lung surgery: a huge process, still ongoing

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Wow — thanks to all my family and friends who’ve continued reaching out to me through this whole process! The good and healing intentions — and love — are like a pool of healing light.

It’s going to take me a while to pull my thoughts together on this one. I had surgery on Thursday 1/17/19. It was initially scheduled for 5:30 AM, then for 7:30, then (according to the surgeon) 9:30, and then, according to his office, 7:30. The actual time was something like 1:30–2:00 PM. Lots of time to sit around in a hospital gown, sipping from ice chips (“nothing by mouth after midnight”), Sweetie at my side. At one point. we considered going home — 1.5 miles away — for awhile, but there was a major snowstorm brewing, and it seemed best to stay where we were.

I had the same anesthesiologist as the for the previous lymph node procedure — so surprised he recognised me! — and  I was glad. He seems competent, informative and connected. So it was a breathing treatment, and other fol-de-rol, and then I was kissing Sweetie g’bye and sailing off to the OR. That last — and the fact that I don’t actually remember entering the OR (the doors opening on the bright white room, and…) that makes me think he might have started the happy juice a little early, due to my high BP. Or simply kindness.

And kindness was the word of the next few days. The pain control was well done — I had an “as needed” (every 15 minutes) fentanyl IV button, as well as, I assume, a trickle of whatever else to keep the overall pain down to a dull roar. There was no lack of pain — the incision was between my ribs, roughly from scapula to sternum — and they had spread the ribs to get at the lung and remove and the whole upper lobe. But all of the follow-up medical staff — who each introduced themselves in soft voices, as they came in to do whatever they had to do — were skilled and gentle, and were focused on my comfort as well as my health. I know I was damned cranky on at least a couple of occasions, but they remained kind and patient.

I’ve never been in an intensive care unit before, and I was there for five days. All my needs were taken care of, often before I realized them, and every request filled as best as possible. Everyone from the janitor to the dietitian to the nurses, the nursing aides, the pulmonary technicians — everyone who entered my room — was quiet, kind, and helpful. (The food was awful, but…)

Meanwhile, outdoors was a record-breaking stowstorm. I was insulated in all possible ways, and Sweetie made his way to my side every single day, bringing me home-made bread, flowers, love, kindness, and his presence.

On my last morning, they moved me from ICU to another unit for a couple of hours before discharge, and it was there that my surgeon removed the tube that drained my chest cavity. “This will only hurt a little…” “YEEEEAHHHHOOOOWWWWW!” Goddamn. He’s a fine surgeon, but “gentle” is not a descriptor I’d use for him.

I’ve been home for a little over a week now, and things are getting better. The pain is abating, bit by bit, and Sweetie and I are learning how to communicate about what we both need in this situation. It’s been an adjustment, but “kindness” is an understatement for his commitment. I’m still really, really short of breath, and out-of-it due to the heavy-duty pain drugs. I sleep a lot. Next week I have a follow-up with the oncologist, and then with the surgeon’s NP (hoping she’ll remove the staples!).

And an upcoming show to paint for! Hopefully I’ll get my website calendar fixed in time.

And my dad is home from several days in the other hospital, with pneumonia and subsidiary problems. So glad he’s better!

Big day done, bigger day coming up

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I was so dreading the chemical stress test! My late mother said she’d rather die than go through another one. And it was highly unpleasant… but only for about five minutes or so. I expect that Mother’s heart was in much worse shape than mine, when she went through it. I had no chest pain, no severe panic, or effects other than breathlessness and a very uncomfortable (full? hot? cold? Hard to describe) feeling in my muscles. There was an echocardiogram first, then another imaging involving a radioactive substance via IV and a camera that circled my upper abdomen. The tech had no name for the type of imaging when I asked. Then the chemical stressor was injected through the IV. I was already hooked up for an EKG, along with blood pressure monitor (BP very high, as usual for me in a medical setting) and then there was imaging again 20 minutes later. Before the last imaging, they gave me a cup of black coffee — my choice of caffeine source — which seemed counter-intuitive to me, but which they assured me would help my blood vessels readjust and make me feel better. True. Nice that they also brought Sweetie a cup of coffee in the waiting room. He’s always there with and for me.

The administering physician asked me about my cancer and the circumstances, and opined that I was very fortunate that my adenocarcinoma had been caught at stage 3 — that often they go to stage 4 before discovery: too late, really, for treatment. (Many thanks again to my pulmonologist!) She wished me well in the surgery, and from that I’d gather that the test results were good. I get the official results in a couple of days.

When we got home I immediately took a long nap, then had some lunch and called my dad (who is doing well at home), and took another long nap.

So: I’m scheduled for major lung surgery – a lobectomy, removal of the upper lobe of my right lung – on Thursday 1/17. My oncologist thinks that there is likely little or no malignancy left in the mass in that lobe: mostly dead tissue which shouldn’t be left there.

Surgery will be way too early in the morning, and I’ll be in the hospital for 3-4 days afterwards, then recovering at home for a month or two. If all goes well, I’ll then be cancer-free.

And my show with Chuck Haupt at Cooperative Gallery 213 is coming up in March!

Final stage of healing… a big step

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We saw the oncologist on Christmas Eve, and the surgeon’s NP on Boxing Day. The consensus is that it’s time for a lobectomy — surgery to remove the upper lobe of my right lung, where the cancer has been. The oncologist thinks there may be little or no cancer left there after the chemotherapy — possibly just dead tissue — and since it’s been proven, over time, that there are no outlying cancers, it’s time for surgery to remove what was there. The tissue/tumor is too large for radiation, he says, but contained enough to remove. And it should eventually improve my breathing capacity. (So tired of being short of breath!) Scary stuff, but successful surgery should leave me cancer free, and the remaining two lobes should expand into the cavity to give me greater lung capacity again.

The surgeon (the one who did my lymph node biopsy, highly recommended by the oncologist) is off for the holiday week, so I can’t be sure of the procedure or schedule until I talk to him on or after January 2, but the oncologist believes access to the lung will be through the ribs rather than a cracked sternum, and it will entail 3-5 days in the hospital afterwards and a 4-month recovery. Looks to me like the soonest I can get into surgery will be mid-January (after my Jan. 10 cardiac work-up, fingers crossed I pass that), and I have a show at Cooperative Gallery 213 scheduled for the month of March. Pretty close. I will probably need help hanging that, or worst case, may need to find an artist-friend who can take my place.

So until surgery I’m going to be painting like crazy — and maybe matting and framing as well — for the show titled “Other Times, Other Places,” with co-exhibitor Chuck Haupt.

Meanwhile, my 89-year-old dad is in the hospital with either an infection in a surgical site, or a gouty arthritis post-surgical outbreak, or both, following carpal tunnel surgery. Hope to see him tomorrow. It was so good to have him — and two brothers, a sister-in-law, and a nephew and SO — here for Christmas Day.

More good news

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We met with the surgeon on Wednesday, December 5. Sure enough, he was a bit off-putting at first — interrupting, not seeming to listen much — but by the time the consult was done, Sweetie and I decided he was a really interesting (and forceful!) character, and a trustworthy doctor. He was generously forthcoming with information, and cautiously optimistic about the outcome on the enlarged lymph node. (Also, unexpectedly and gently sympathetic about my tubal pregnancies in the 1980s — I’ve never experienced that with any other physician.) Biopsy surgery was set for the following Monday. Pre-surgical testing took up most of that Friday. On Monday morning I had a slightly sore throat, and we overslept a bit, but it was on with the show .

Wilson is not my favorite of the local/regional hospitals, but that’s where the surgeon practices. Pre-surgery, I felt well cared for by the nurses and the anestheseologist.  Sweetie stayed by me as long as he was allowed, and I was so glad to have him there. The procedure was pretty grisly — he made a 2″ cut in my neck, center-front, just over the collar bones, and inserted camera and sampler behind my sternum, down to the lymph node, took samples, then pulled everything out, and glued and bandaged my neck back together. Luckily it was under general anesthesia. They sent me home the same afternoon. The bruising and glue at the wound are pretty ugly (I took the bandage off on Thursday, as instructed), but I had pain for only a couple of days. I also came down with a bad cold on Tuesday.

BUT — there was no cancer in the lymph node!

Had there been cancer, surgery wouldn’t be an option. That means my oncologist and I have to come to a decision about whether I should have lung surgery (a really major undertaking) or continue some form of chemotherapy with radiation. The surgeon seems to favor surgery (no surprise, right?) but wants a cardiac work-up first, since I’m overweight and have a long family history of serious heart problems. He referred me to a cardiologist in his practice, who we’ve already seen… and who I don’t care for at all. But on with the testing — if it turns out that I do need a cardiologist in the future, it won’t be this guy.

I see my oncologist on Christmas Eve.

Next steps in the healing process

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I saw my pulmonologist — the physician who found my cancer in the first place — on November 12, and he was upbeat. Delighted to see the report of the benign ovarian tumor, and pleased with the CPAP reports. My oncologist — with whom he’d gotten me the first appointment — is, he said, “the very best,” and he’s optimistic about my outcome. Thanks to my sweetie’s reminder, I thanked him for finding my lung cancer in the first place, with an aggressive series of tests.

Following a CT scan last week, I saw my oncologist three days ago — there’s no BAD news. Nothing has gotten worse… or better. He wants me to get a biopsy of the enlarged lymph node in my chest, to see if it’s malignant. Statistically, chances are that it is. But he’s hopeful that it’s not, because, as he said, “so far we’ve found that you’re not as sick as we thought you were.” (However, I’m still considered Stage 3.)

The thoracic surgeon’s office called yesterday with a schedule for a consult on the biopsy procedure — that will be the fifth of December, next week. I’d initially seen a surgeon in the same office — a physician both my husband and I felt good about — but he’s since left town to be closer to family in California. So I’ll be seeing a highly experienced physician my oncologist greatly respects, though he has some misgivings about the man’s personality — “people either love him or don’t.” We have yet to schedule the actual biopsy — an outpatient procedure done under general anesthesia. Beyond that, we’re most likely looking at modified chemo, plus radiation. Lung surgery is a possibility, down the road, but the oncologist isn’t sure at this point that it would be useful.

If the surgeon doesn’t seem helpful, we’ll seek a second opinion.

And meanwhile, I’ve pulled my lower back, twisting and bending in a bad way. Treating the spasms with capsaicin and naproxen — I surely wish my acupuncturist hadn’t left town!

Waiting to heal

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So there were no malignancies found during my abdominal surgery — such a relief! — and now, not quite three weeks out, the laparoscopic incisions are healing. I’ve had a post-op check-up with the gynecological oncologist in Syracuse (hardly worth the 60-mile trip — she barely looked at my surgical sites, didn’t even touch me, just chatted about what she did and didn’t find during surgery — but she did have admiring words to say about my oncologist here) and a consultation with my Binghamton oncologist. I’ll be having a CT scan on the 20th, to see what’s happening with the lung tumor, and then he’ll come up with a plan for further treatment, depending on what the scan shows. There are a couple of possible paths: extended modified chemo, radiation, lung surgery, or a combination of all or some of those. Meanwhile, I tire easily (as always, these days!) and my cough seems to have worsened. Trying to push myself a bit — I am SO fat and out of shape — but also give myself time to heal from the surgery; the official timeline is six weeks. And I still ache internally. It’s a fine line to tread. Am I being lazy, wise, or self-indulgent? So hard to tell.