Category Archives: lung cancer

Downs and ups

I’m going to begin with another blanket apology. Not only have I been a poor communicator when it comes to blogging, I’ve also not been very consistent about returning personal emails, texts and phone messages. Somehow I lost my date book (in a snow drift somewhere, I betcha) and chances are excellent that if I’ve not done so already, I will miss some appointments.

This galls me because I don’t like being a no-show. In a world rife with promises and proposals, showing up is the only real currency, and I’m afraid I’ve fallen behind in my accounts.

There. Now I’ve at least acknowledged my shortcomings and offered an apology (perhaps preemptively in the case of upcoming appointments).

On the home front, I’ve been back in my apartment for a week and a half now. Servpro did a wonderful job and once again my landlords are to be commended for their quick attention to the mold situation. My eyes are no longer red each morning and my rash has disappeared as well. The only thing that has lingered is my cough, and that, unfortunately, is due to the progression of my cancer.

Yes, when progress is anything but. I saw Alice last week to review my latest scans. Compared to the previous CT scan (six weeks earlier) my cancer is picking up its pace. The largest area of tumor in my upper left lobe increased in size  from 4.0 cm x 1.9 cm to 4.2 cm x 2.5 cm. Noted on the radiology report (and quite obvious when viewing the earlier scan side by the side with the most recent one) is increased prominence of the ground glass opacity. And of course there are numerous little nodules in my right upper lobe as well.

The plan is to start back on Xalkori (crizotinib) asap. First, however, my insurance company has to approve the prescription. To that end I’ve received an automated phone call making certain I was me (social security number? mother’s maiden name?) but no other word and certainly no drug showing up in my mailbox. In the meantime, I’m continuing to enjoy grapefruit, which will soon be verboten.

How am I feeling? Overwhelmed. Sad and occasionally very frustrated. Tired and weaker; both of which I attribute to the progression of my cancer. Sore—I’ve screwed up my back something wicked. I was carrying my easel across the parking lot and slipped on some black ice and fell down hard. Unfortunately I think it was the last straw for my back. So, now I’m sporting a brace, sucking down advil and just hoping that time (and, finally, some respect!) will heal.

Of course, in addition to the trials and tribulations there is the wonder and not some small sense of pride at this fresh chapter. I’ve made fantastic new friends and gone to parties, potlucks and art openings galore. In a further sign of my commitment to the future (rsvp-ing, if you will), I have rented some additional studio space at the mill next door. It is where I shall paint but also set up shop—soon I hope to be offering for sale not only my photos and paintings, but a slew of vintage clothing.

Yes, in those months when I was getting chemo I was busy. Shopping. Hanging out at thrift stores and buying up a rather impressive array of clothes, shoes, hats, scarves, bags, ties and jewelry. In April the doors will open to The House of Redemption: Second Chance Clothing.

So you see, as I said to Alice, I’ve got plans. Big plans. And although cancer may mess with them a little, it’ll just be a temporary setback. All this stuff I’m hoping to do is a form of positive visualization; my rich fantasy life put to therapeutic use. And I am certain it can be realized. To wit: after my appointment with Alice last week I placed a phone call to a woman who was selling some inexpensive teak storage units on Craig’s List. I liked the sound of her voice and as I drove to her house I fantasized that she would be really great, we’d become fast friends, and she would invite me for dinner.

Well, when she opened her front door I was enveloped by the smell of curry. We began to chat about this and that. I agreed to purchase the shelving and went out to my car to get it ready for loading. When I came back inside, this very nice woman said that she had just spoken to her husband on the phone and if I waited twenty minutes, he would be able to assist me. And then she asked me if I would like to stay for dinner.

I laughed and told her that I was almost embarrassed as I had in fact imagined this particular scenario. I suppose some people might have been alarmed at this point, but as it turned out, we were two peas in a pod. Her husband came home, we (well, mostly he) loaded my purchases, and then the three of us sat down for a delicious meal. It was a magical experience and, I am certain, quite out of the ordinary for a Craig’s List transaction.

Moral of the story—go ahead and hope. You never know where your imagination may lead you.

This morning my husband whispered

rabbit rabbit in the dog’s ear because his wife was still sleeping. And not because she had overindulged. In fact, I’ve been up to my ears working on some proposals and all I wanted to do last night was sit mindlessly in front of the television. Something I almost never do. The Three Stooges, an episode of Star Trek, and Justin Beiber, Pitbull and Lady Gaga at Times Square. We tumbled into bed just before the fireworks started (legal in New Hampshire, so a must have at any occasion). Poor Buddy, he of the rabbit rabbit early morning incident and, sadly, epileptic, was becoming more anxious with each boom. I tossed and I turned and it was already three hours into 2012 before I finally fell asleep.

WordPress, the online platform for my blog, emailed users end of the year stats. For what it’s worth, I’m honestly not sure how accurate their algorithm, hits = views, is. However, supposedly Life and Breath was viewed about 58,000 times last year. A drop in the bucket compared to say, the number of people who subscribe to Alec Baldwin’s twitter account (wait–I just tried to verify that number, and his account has been suspended). Okay, eat your heart out, Alec!

I was most tickled by the fact that there are quite literally people all over the world checking in. An icon of what looked like a little Russian nesting doll represented areas of greatest concentration, (bigger nesting doll, more people reading the blog) but it is also broken down by region, and the stats don’t all add up to 100%. I couldn’t tell you what’s up with that, but my best guess is that they stopped after the top 5 (or 2 or 3). Anyway, it’s interesting; this snapshot of our global community:

North America

92.9%  US, 7% Canada, .1% Mexico

Europe

27.4% UK, 12% Finland, 10.2% Sweden, 8.3% Netherlands, 6.8% Belgium

Africa

46.7% South Africa, 20% Egypt, 6.7% Kenya, 6.7% Uganda, 3.3% Zambia

Asia

25.3% Japan, 14.9% Hong Kong, 14.7% India, 8.9% Phillippines, 8.3% Indonesia

Oceania

63.3% Australia, 36.7% New Zealand

 

So, to my friends all over the world, those I’ve met and those I have not, I wish you a happy and healthy New Year.

Unwanted progress

I will tell you about the rest of my magical trip to Colorado. I promise. But first, I have to report that stability no longer reigns. I have transcribed some of the radiology report below:

LUNGS:  On image number 51 in the right upper lobe there is a 1.1-cm ground glass nodule which has increased compared to November 30, 2010. On image number 57 in the region of the minor fissure there is a 5-mm nodule which is increased in size compared to the prior examination of January 20, 2011. On image number 61 adjacent to the minor fissure, there is a region of ground glass opacity which is mildly increased since January 2011. 

The inferior aspect of the left upper lobe nodule which was recently biopsied is mildly increased. For example, on image number 46 a solid ground glass nodule is 1.3-cm (previously 1.1-cm on the January 2o11 examination). On image number 51 in the left upper lobe, there is a 6-mm nodule slightly increased in size compared to the prior exam. A focus of ground glass opacity in the periphery on image number 50 is also mildly increased. An area of ground glass opacity in the left upper lobe image 57 is more solid appearing. End of ground glass opacity in the left upper lobe extending from images 63-97 is increased. For example, on image number 66 there is a region of ground glass opacity which is 4.3 + 2 + 1-cm (previously 3.7 + 1.6-cm). Increased ground glass opacities also demonstrated adjacent to the left ventricle.


PFS, or Progression Free Survival, is one of the criterium used to evaluate the efficacy of a drug in clinical trials. My period of PFS is now officially over, and I could be released from the trial. However, conversations have already taken place between my team and Pfizer. As I still appear to be receiving some positive benefit from crizotinib, I shall continue therapy with it.

I have a brain MRI coming up due to my report of increased vomiting and headaches; I feel it is related to the fact that crizotinb is no longer totally effective. A busy boy is a good boy, and not finding enough suitable targets in my body anymore, crizotinib has evolved into a bit of a bored boy, perhaps engaging in a touch of random mayhem (*not a medical interpretation–merely my own). Dr. Shaw is, however, diligent and although brain mets are unlikely with BAC, they are not unheard of.

My next CT scan will be in two months again and I am to pay attention to my symptoms. For the moment, I have slight SOB, some coughing, and a crackling sound in my left lung upon laying down. I am cognizant of all too familiar changes in my body, yet I don’t really feel sick (sad, yes, sick, no).

As far as possible treatment options; we are now tossing around three. Another potent ALK inhibitor, Novartis’ LDK378, has just begun enrollment for a phase I clinical trial. Studies have been done in the lab regarding my secondary mutation’s responsiveness to this experimental therapy, and it looks to be a good match. There is yet the possibility of an HSP-90 inhibitor or Alimta.

After my appointment I held it all together until I saw Marguerite, the head trial nurse. Then the tears flowed, as Marguerite is the kind of person who makes you feel as if you’ve entered a safe harbor. She hugged me and acknowledged the ‘suckiness’ of the report, but also reminded me that I still had significantly less cancer (perhaps 50%) than I’d had when I’d gone on trial. And now, instead of one wild card option, there were several. Not to mention the fact that I had this incredible team scouting out all the possibilities. Sarah popped in for a hug too and then Irene came in with her accupuncture kit and said she’d ‘fix me up’. I told her I’d take strong and brave. I don’t know if it was the needles or her companionship and conversation, but I was starting to feel better.

Starving, I tucked into my hospital ham and cheese sandwich and better than average tomato soup, followed by a red velvet cupcake made by Marguerite. That cupcake was several mouthfuls of happiness.

And then I gathered up my gear and composure and headed home. And I was okay, until I said goodnight to Peter and he started to cry. Damn.

I tell you what. No matter how ‘routine’ this all becomes, it can still kick the stuffings out of you at times. I will pull it all together, because that is what I do. But today I’m feeling a wee bit of battle fatigue. There is no other way to put it.