Author Archives: linnea11

It was

Me giving me encouragement: the Wall of Hope on floor eight of the Yawkey building at MGH. When I first started getting treatment, a secret goal was to one day appear on the Wall of Hope. 🙂

A long, long day. But in the parlance of my kind (the terminally ill), a long day beats a short day all to heck.

First, my life is blessed with a plethora of goddesses. Childhood friends, my daughter, sisters, my many new friends, nurses, phlebotomists, counselors, medical doctors. Men are great and I love a heap of them as well but this group of women has been my consistent go to for the tough stuff.

One goddess was in tow yesterday, my friend Sally: pals since the fifth grade. I am beginning to realize how beneficial it is to have company at these visits, after years and years of going it alone.

I had an appointment with the goddess who takes care of me from the neck up (as I like to say), Mary Susan Convery, my thoracic social worker. She keeps my head on straight.

A quick trip down Charles St for a hug from my daughter (Sally is her actual godmother) and a delicious lamb sandwich at Tatte. And then a long wait in those spaces appropriately called waiting rooms.

Oh, the irony. Those of us to whom time is so precious spend far too much of it waiting.

Anyway, the action got started around four with a visit from the head goddess, Alice. Chit chat about how I am feeling (great for the moment, on that artificial steroid high, my dyspnea temporarily under control.) But I was eager to cut to the chase—how about those scans? She had read them herself and her assessment was that they were mildly worse than the ones in December. Now remember this is while getting chemo so bummer. Of concern is the lymphangitic spread as well as the fact that the slight amount of fluid in the bottom of my left upper lobe is also increasing.

Alice puts more store in symptoms though and mine are not encouraging. Definite downward trend. So we agreed that I’d go ahead and get chemo one more time (and possibly two, depending on timing and tolerance) in the hope that it is at least slowing down progression.

There was a bright spot though and that was in the form of options. I figured we were down to one–lorlatinib plus a mek inhibitor. But Alice described yet another possibility. That after all these years on TKI-s it might be good to take a break. Maybe let my cancer forget some of what it has learned. To try a novel therapeutic, one my cancer is completely naive to.

While getting infused I signed the consent forms for a phase I clinical trial for a drug called DS-1062a; an antibody drug conjugate which targets a protein called trophoblast cell-surface antigen2 (TROP2), which is found in copious quantities on the surface of cancer cells.

This sounds exciting to me–a fresh possibility. But it is going to be intense. First there are the necessary hoops to jump through in order to qualify, including a lung biopsy, heart scan, ECHO, and eye exam. And all that blood, blood, blood (30 teaspoons for the first three cycles).

Every three week infusions but the first week, at least two additional visits. And then for the subsequent nine weeks, I return to the hospital once a week, with a second lung biopsy at week two. It is going to be consuming–that is, assuming I qualify.

But it also has given me fresh hope (I love the luxury of choices).

Good thing. Chemo may not be kicking cancer’s ass, but it is kicking mine. My liver is a tad inflamed–Alice asked me if alcohol might be involved. Truth? Yes. Goodbye to that for the time being. Sally filled me with healthy fluids last night and this morning she made me oatmeal, hot lemon water, and a vegetable chicken soup. I am in good and loving hands.

So yes. Stability or response would have been the preferred report but this feels if not a door, at least a window. And that’s what I need. Fresh air and a bit of a vista to contemplate.

xo

If

When I was a wee child I would recite a prayer before bed each night:

Now I lay me down to sleep and I pray the Lord my soul to keep. If I die before I wake, I pray the Lord my soul to take.

And then my parents would turn off the light and shut the door to my bedroom, leaving me alone with that happy thought. A stupid little prayer that scared the shit out of me and was undoubtedly at least partially at the root of a life long case of acute anxiety. I mean, WTF? No wonder I suffered from nightmares.

I thought of this prayer today as I have begun to preface so very many of my thoughts with ‘and if I live.’ Irony free.

Only someone who has been in my position where death is not just a possibility but rather a probability can understand.

It is rather like being in an out of control vehicle, hurtling headlong to a bluff overlooking the ocean. There is a remote chance that you will be able to steer the car to safety at the last moment. However, as you don’t want to waste a moment of what might be your last time on earth, you are also doing your utmost to enjoy the scenery.

It is that flipping surreal.

I have a CT scan on Tuesday which will give a clinical assessment of where we are at. From the objective of the person who is in this body, I can only tell you that it’s getting harder and harder to breathe in here. Hardly encouraging.

And yet the view out the window? Still extraordinary.

xo

Hold me

I am at a tough place. Physically, financially, emotionally.

Moving again combined with chemotherapy plus lorlatinib has been more difficult than I imagined. I am exhausted and raw–figuratively and literally.

In December my five years of alimony came to an end. The previously draconian divorce laws in NH have been revised, and were I to be divorced now, I would have received alimony for up to one half the length of my marriage. I asked for an extension which was summarily denied (no surprise). I don’t qualify for disability (not enough work credits–being a stay at home mom bit me in the ass–hard) so I am going to have to have to rely on my retirement fund. It is all very stressful and yet small potatoes compared to my health issues.

Breathing. So simple and yet not. Thus far no indication that chemotherapy is making a positive difference. Which of course makes the abundant side effects less tolerable as well. And then there is the mind fuck of pushing ahead with the belief that this is all for a reason while also understanding that in fact I may just be making myself sicker with no resultant benefit.

On Monday I was given the option of forgoing chemo. My response was ‘hit me.’ I need to believe that I am accomplishing something.

There is also the reality that I am essentially going this alone. That the dog still needs to be walked and I need to eat, neither of which is going to happen magically.

I have no doubt I shall get through this. It is what I do. But it also occurred to me (again) today that perhaps the worst part of being alone is having no one at my side. That human touch and warmth would do far more toward making me feel whole than a meal or a walk for my dog (things I can do myself).

Well. I am not one to let conventionality stand in the way. If you’re a close friend of mine and within driving distance, don’t be surprised if I hit you up for a sleepover. Nothing fancy. Not sexual.

Just hold me.

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 😉

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.

Mañana 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