Tag Archives: chemotherapy

What the hey

I don’t know if it was the Captain Marvel movie (love me some scrappy heroine), the hot water with lemon that my friend Peter prescribed to start my day, or Jenny Ro’s bone broth soup. It couldn’t be the chemo, could it?

This girl has turned a corner. As of Monday evening, after a nine hour day of physical labor (I am crazy, but I needed to get the rest of my art stuff out of my old apartment), I have felt not good but GREAT.

Physically strong, almost zero wheeze (what’s up with that?), I am now of the mindset that I am going to live.

Powerful, powerful feeling, that. And just the boost of confidence I needed.

This weekend I am going to spend a couple of days in my new studio space. Making art. I could cry just writing that sentence.

This means I am likely to go another round of chemo prior to starting the clinical trial. As long as I wasn’t feeling any improvement, that was a dismal prospect. However, there is nothing I won’t do if I believe it is capable of knocking down my cancer.

Absolutely Nothing.

xo

Weary

Not in spirit, not in soul. Just body.

This part of chemo I had forgotten. A bone numbing fatigue that even a consummate overcomer such as myself cannot override.

It is difficult to be patient. My mental energy remains exultingly high. I have plans, big plans. And much to accomplish.

In three weeks I shall have my first scan and will know better whether this hit on my physical self has been for naught. Of course I remain exceedingly hopeful that my cancer is also struggling. And if that is the case, well, then I can continue to justify this reduction in stamina.

I have an agenda. A clear agenda that keeps me incredibly focused. Tolerant of discomfort. Stubborn and steadfast. Eyes on the prize. Eyes on tomorrow.

xo

Sometimes I love me some drugs

Not gonna lie. The unholy combo of lorlatinib, carboplatin, pemetrexed, MOVING has been kicking my ass. Oh yeah, and cancer. Two twelve hour one day drives to Toledo and back were not as restful as one might assume. My energy is shot, my skin is shit (long term side effects of lorlatinib not helped by the new stressors) and last night I fell to sleep just imagining that I was a baby held in some loving arms. Breast fed, not with a bottle–the route my hep fifties mom went ūüėČ

Yep. I am spent. Second infusion is tomorrow and steroids came to my rescue today.

Nasty, nasty drug that one. Insomnia, constipation, rage. But also an unnatural sense of energy just when mine was flagging. And not one to waste an opportunity, I got a hell of a lot done today. This new little home of mine is looking just like that—a place that someone would like to come and stay awhile. Maybe hunker down a little.

Ma√Īana mama.

xo

Rattle and roll

I was exhausted last night. Rightly so, I imagine.

As I lay in bed, I could feel the powerful impact of two different cytotoxic agents on all the various bits of me. Havoc was being wreaked, like some marauder in the garden.

I went with this garden imagery, the cancer in my lungs a persistent and deeply rooted weed. And I pictured it being torn asunder, plucked from the substrate of my flesh, shaken violently, bent, torn, limp, lifeless. Every last cell of it.

When I awakened this morning the sound in my lungs had changed in timbre. The crackle of leather had been replaced with something akin to a broken tea cup. Very fine bone china, rattling around.

Hmmm, I thought. This is an improvement. What was hidebound now feels looser, dryer, easier to dislodge.

Onward.

xo

Up and over

When titling my previous blog I had a verb in mind. An action verb.

Chemo is a wall. And–frankly–that is the point. What sucks for me hopefully sucks for my cancer as well. All those side effects are indicators that the poison is going about its nasty little business.

What I’d like to clarify is how I’m taking this. Not lying down.

This particular chemo combo is a small misery compared to what I have experienced in the past. Fifteen years ago I was given a doublet of cisplatin and taxotere. My then oncologist explained, in the bluntest terms possible, that he intended to bring me to the brink of death and then bring me back. All in the name of eradicating my cancer.

Well he was true to his word. That shit blew. And I’d start to feel the side effects before we even got home after infusion. I spent days riding out the storm in my lazy boy chair (dubbed the lazy girl). By the fourth cycle I didn’t have a hair or an ounce of extra fat on my body and I was coughing up what looked like coffee grounds.

Now that, my friends, was hell. And it gave me some perspective. A rocky baseline if you will. Added to the mix was the fact that seven weeks earlier I’d had a lower left lobectomy, not vats but rather the old fashioned way. Ribs spread, large incision. Brutal.

So this is, relatively speaking, a walk in the park. I do feel a tad crummy. But I am also going about my business. As I live alone that means walking the dog, shopping for groceries, cooking. And, because my life is in fact over the top crazy, moving.

Yes. Again. My current situation did not work out quite as I imagined. One of my closest friends understood that this had become a source of stress for me and as fate would have it, an apartment that was located directly across the street from her opened up.

It was now or never and given the possibility that I may feel worse rather than better in the future, it was a no-brainer.

So yeah. Rather than surfing the couch I have been loading and unloading boxes. Yet again. On Wednesday my friend Melinda has arranged for a moving company to take the furniture and the books. And yet another impossible task will have been accomplished. Under ridiculous yet necessary circumstances.

I share this all so that others understand that even though chemo is undeniably unpleasant, it is also doable. This is an important concept for those who have only been on targeted therapies, and who are loathe to consider chemo, because of its bad rap.

In my case, I have a clear and unwavering agenda. It’s this: I really want to live. And I am willing to scale a million walls in order to do so.

Who knows. Maybe chemo works better if you’re not laying on a couch. I kinda doubt anyone has done any research around physical activity post infusion.

Consider this a pilot study.

xo

Scaling

I have hit the wall that is week two. Massive fatigue. Rheumy eyes. Gums that weep, a mouth that feels like sandpaper. Nosebleeds.

Loose of bowel, I’ve lost five pounds. Neuropathy is both afoot and at hand.

Numb and bloody. Edges and corners raw. But alive.

Alive, alive, alive.

And happy about it.

I had the thought that this is what cancer reduces existence to. Gratitude even in misery. But then I rethought that thought. And this time it came out this is what cancer elevates existence to.

How fucking fantastic is that. This, my friends, is unconditional love. Life, so treasured, that even when it’s all a bit raggedy it remains sought after. Beloved. Adored. Precious.

Something worth fighting for.

xo

Oh girl

I think I got this.

I drove myself to and from the hospital yesterday. No problemo. Early morning breakfast with my daughter, and then an appointment with a neuro onc. Two weeks ago I started getting this very brief and yet excruciating pain on the top of my head. It lasts seconds, is intermittent and unpredictable in onset, but is always in the exact same place. And it stops me in my tracks.

My first thought was an unusual presentation of shingles. But given that I am a cancer patient one must always rule out other possibilities. My exam demonstrated decreased sensitivity on the left side of my body, top to bottom. My brain MRI’s have been positive for multi infarcts for some time now (little strokes) and a slightly larger stroke is a possibility. As is–the highly unlikely–scenario that I have a tumor or some other structural impingement. This finding is seemingly unrelated to the pain on top of my head which could be trigeminal neuralgia or maybe even just some weird neuropathy. At any rate, I’ve not had a brain MRI for a good long time now and so one is scheduled for the 19th, when I receive my next chest CT scan. This will necessarily be with contrast, but evidently better contrast than before.

After that I was joined by my friend Jenny Ro, who you’ll hear more about later. I met her while I was preparing for my TED talk and we just immediately clicked. She was gracious enough to offer to be my chemo buddy yesterday. My son Peter joined us for a couple of hours as well, lending an almost festive feel to the affair.

First up was scan review, and it was as I expected. Overall progression. Not rampant but persistent. Alice said she was glad we’d decided to begin treatment.

And then, up to the eighth floor and infusion, where I was immediately recognized by a phlebotomist. That’s what happens when you’re a lifer. Some saline, ten minutes of carboplatin, more saline and then thirty minutes of pemetrexed. In and out.

It was necessary to stop at the pharmacy as I was out of ativan and needed some scrips for anti emetics as well. And some tortilla chips to go with the guac I’d stocked up on the day before. That, some cut fruit, and turmeric milk all went down nicely.

I slept like a baby, waking once in a cold sweat with tears all over my face. No idea why.

Today I am feeling a little bit more like I’ve been run over by a truck, but again, all manageable. Alice texted me and I said that if I continue to feel ok, then next time I’d like to consider ramping up the carbo dose. Of course, I have a scan prior to that, so if it’s not doing anything, I suppose there is no point. But my fervent hope is that it is.

This girl. This girl wants to live.

Carrying on

This again

This again

I had my repeat mammogram yesterday. It was my right breast that was in question, and initially seven additional views were taken. Those of you who are of the female persuasion are only too familiar with this procedure, but for the rest of you, here is a precise description of a mammogram copied from womenshealth.gov (italics mine):

“You stand in front of a special x-ray machine. The person who takes the x-rays, called a radiologic technician, places your breasts, one at a time, between an x-ray plate and a plastic plate. These plates are attached to the x-ray machine and compress the breasts to flatten them. This spreads the breast tissue out to obtain a clearer picture. You will feel pressure on your breast for a few seconds. It may cause you some discomfort; you might feel squeezed or pinched. This feeling only lasts for a few seconds, and the flatter your breast, the better the picture.”

Ironically, after coaching you into an awkward position, and then squeezing your breast so hard you think it might just pop, the technician advises you to ‘try to relax’. Yup. Thats the same line repeated at our other annual exam, the pap smear. In both situations, relaxation is simply inconceivable.

After a sufficient amount of squashing I was ushered into a special waiting room while the radiologist reviewed the films. Morning television, a pile of tatty magazines, and, curiously, a large collection of Chicken Soup for the Soul’s. And a reassuring sign that read “We compress because we care.”

Soon I was joined by another woman; a real Chatty Cathy. The first thing out of her mouth was “Do you have breast cancer?” I was momentarily mystified, but then I realized that my lack of hair is a potent signifier. So I told her that no, I had lung cancer. Her next query: “Oh, and it spread to your breast?”. Oh my. After telling her that I hoped not, her final, and I suppose inevitable, question was, “Did you smoke?” I was relieved when my name was called and I was spared from further conversation.

It was but a brief respite, and I was returned to the waiting room after two further (and even flatter) compressions/impressions. Fortunately Chatty Cathy’s nose was buried in a magazine.

When I was fetched again I was led to a far room for ‘privacy’. There was no way this was going to be good news.

Sure enough, The findings were as follows: “Diagnostic views of the right breast including spot magnification views were performed demonstrating a cluster of suspicious looking amorphous calcifications in the right central medial breast. A second grouping of calcifications is noted within the right superior breast. These 2 groupings appear to contain morphologically similar calcifications. The breast tissue is heterogeneously dense, which may obscure detection of small masses. There are no dominant masses seen with the right breast.”

The radiologist explained further that these were ductal microcalcifications and that worst case scenario, she felt they might represent a ductal carcinoma in situ.

Tomorrow I will meet with Dr. Shaw for a scan review (I had a chest CT scan on Monday) and then my third round of chemotherapy. On Friday I will return to the Avon Breast Center at MGH to meet with a breast surgeon and to schedule a biopsy (80% of breast biopsies are not positive for cancer–I’m hoping mine will be one of those).

And just to make things more interesting, this is the regional forecast for Friday:

...A POTENTIAL HISTORIC WINTER STORM AND BLIZZARD IS EXPECTED TO
DROP 1 TO 2 FEET OF SNOW ACROSS MUCH OF THE REGION FRIDAY INTO
SATURDAY...
Never a dull moment…

Weathering

A gale has been battering me, from the inside out; there are moments when I have felt unmoored.

At the time of my last post, I was hopeful that the tide was turning. However, by the following morning, the nausea suddenly seemed inconsequential, as my peripheral neuropathy became more persuasive. Dr. Shaw checked in last night and I expressed my concern; her feeling was that by today (day four) it should begin to abate. When I awakened this morning, it was clear that my symptoms had intensified. My face had begun to lose sensation; by lunch time swallowing seemed to present a challenge.

Because of the steroids, I have been unable to really sleep. Two ambien buys me three hours on the top end, followed by another hour or two patched together. I am exhausted but wired and almost preternaturally aware. I cannot stop trembling. My vision has been effected as well, and I stumble when I walk. Warned that a crushing fatigue will likely follow withdrawal of the steroids, I almost welcome it. To sleep and not to think seems like the best way to weather this storm.

And then the weeks…

In addition to losing my hair, I had one other health ‘crisis’ following my first chemotherapy session. ¬†I began to cough and to be quite short of breath again, and was cognizant of the same rattle in my lungs which had been a constant before my surgery. ¬†After we called my oncologist, he asked that I come in. Following a physical exam I was given a CT scan of my chest, which showed nothing more than a small area of plural effusion around the lobectomy scar (to this day, I have lobular thickening in that area that is noted on each radiology report). ¬† He then suggested that I try using a nebulizer at home. ¬†This treatment prompted a lot of productive coughing and gradually resulted in an easing of the breathlessness. ¬†I ¬†followed up with a pulmonologist, who put me back on asthma medication again. ¬†Perhaps three months ago, I finally weaned myself off of the inhaler (Advair), but as I also have allergies, I still take Singulair and Flonase.

And so it went;  all summer long.  Chemo would knock me on my butt, and then just as I would get back on my feet again, it would be time for another go. Psychologically, it was one of the most difficult challenges I have faced.  Cancer is tough that way.  While the purpose of the treatment is to make you better (whether curative or palliative), generally it makes you feel a hell of a lot worse, at least initially. However, the will to live is strong, and most of us will do whatever it takes to extend our lives.

In between treatments, I would nestle in the hammock until I was strong enough to move about.  Occasionally, bundled up to shield my skin from the sun, David took Peter and I out in our skiff.  We lived in a coastal community bordered by salt marsh, and David would guide the little boat inland amid the tall grasses.  I took a lot of photos of the marsh that summer, some of which I am using now as reference for paintings.

As predicted, each chemo treatment was harder than the previous one.  By my fourth and final infusion, I vomited what looked like coffee grounds; it was actually blood.  But I had made it through to the other side.  Bald, skinny, and for a time diminished in both a physical and mental sense, I was happy to turn my back on this particular summer.  At the beginning of September I would have another scan, and I was oh so hopeful that the report would be  a good one.