Monthly Archives: December 2012

Still standing

turning to ice

turning to ice

A storm two days ago dropped ten inches of snow and it finally looks a proper winter around here. Today I trudged down to the pond; it was better than good to be out of doors.

I almost feel myself again after what can only be described as a rough go; the first cycle of carboplatin and alimta was significantly more difficult than I had anticipated. Of the attendant side effects it is the neuropathy that I continue to find concerning (or unnerving, as I said to Dr. Shaw–in an apt yet unintentional pun).

According to a National Institute of Health webpage: “Peripheral neuropathy describes damage to the peripheral nervous system, the vast communications network that transmits information from the brain and spinal cord (the central nervous system) to every other part of the body.”

Unfortunately, this damage can be both catastrophic and irreversible and it is not always easy to predict the extent of injury. In my case, by day five some of the symptoms had begun to subside; a positive indicator. However, a week and a half after infusion, both my internal tremor and a noticeable lack of sensation (primarily in my feet and hands) has lingered. The question is, will I experience an even greater degree of neuropathy during the second infusion?

The next ten days will be telling. Should my nervous system show signs of healing, I will be somewhat reassured. However, if significant neuropathy remains, I may be reticent to risk further injury.

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.

Back to the present with a jolt

Showing a little bit of attitude

Showing a little bit of attitude

I plan to return to Marfa and points beyond as well, but first a quick update:

Tuesday, the day before infusion, I started taking dexamethasone, a steroid designed to stave off an allergic reaction to the chemotherapy agents, and with some additional anti-nausea effects as well. When I went to bed that night, my lungs sounded better than they had in months, and I coughed up very little fluid. It would follow that a good part of bronchorrhea is related to inflammation; it’s a shame steroids come with so many negative side effects. To wit–that night, I had a splitting headache and didn’t sleep a wink. I’m just glad we had agreed that David would drive me into Boston the next morning.

That was yesterday, Wednesday. Having taken the advice of members of my support group, prior to chemo I requested thermal packs to warm up my veins and I drank lots of water as well. After being dosed with zofran and more dexamethasone, infusion began. Alimta was only 10 minutes, and then another 50 for the carboplatin. Of course, that 60 minutes can stretch into many hours, what with waiting for lab results and the pharmacy to mix my personal cocktail.

L1020614I should add that I dressed for the occasion. First, the ironic but somehow very appropriate t-shirt shown above. My diamond earrings, to go with the platinum that would be coursing through my veins (my idea of a funny). And a lucky charm; some years back Jemesii  cast an actual piece of Lucky Charms cereal in silver, and it has become a cheeky and cherished amulet.

Heavy metal time

Heavy metal time

We left the hospital around 3 pm and I was feeling a little bit loopy but still pretty chipper. I took a couple of ambien prior to bed and logged at least six hours of good sleep. This morning I had two more steroids as well as some zofran and sent out an email to my family and a few friends to say that aside from a somewhat leaden (make that platinum) feeling in my limbs, I seemed to be tolerating the treatment. However, I believe I crossed my t’s and dotted my i’s a bit too soon.

An hour after lunch, I got hit with my first wave of nausea. I popped a compazine to little effect. After an hour I took two more zofran. Fortunately I never vomited, but was caught off guard—I’d not expected to be so nauseated on my first course (the side effects of chemo tend to be cumulative). The headache returned and I gravitated between chills and sweats; fortunately no correlating fever. My tongue felt swollen and I became cognizant of peripheral neuropathy (tingling and numbness–in addition to the relatively mild neuropathy which has been a lingering side effect of cisplatin/taxotere) in both my hands and feet. This ride was becoming bumpy.

However, I am happy to report that I feel somewhat better tonight. Also, I am greatly cheered by the phone call I received from Dr. Shaw:  the gene sequencing is a go.

Onward. Let’s just hope that the cancer’s butt is being kicked too.

There are parts I’m leaving out

No, not about the biopsy. In fact, cancer is but a footnote in the events I’ve yet to describe. First, Thanksgiving in Marfa, Texas. Yep ya’ll, we hauled ass to Texas for yet another annual Thanksgiving bash. David, Peter and I were joined several days later by Jemesii and her two chihuahuas, Kala and Fig. And then on Wednesday, our son August, my sister Bink and her husband Greg and one of their two daughters, Zola (we missed you Mesa!) made the long drive south from Colorado. They were followed by my brother John and his fiancee Amanda and her chihuahua Max (the perfect gentleman).

That night we all enjoyed bowls of John’s famous chile with corn bread on the side; a meal that has now become a Marfa Thanksgiving tradition. And those who could, had the first of several Marfa margaritas.

David had already begun babying a Madeira ham and early Thursday morning he put the bird in the oven as well. Midway through the day we sat down to an amazing feast: Ham, turkey (free range, small of breast but big on flavor), mashed potatoes and the best gravy ever, biscuits, greenbeans, wild rice, stuffing, carrot and turnip and homemade cranberry sauce. Locally made apple, pumpkin and pecan pie for dessert.

Of course, before actually digging in we paused to give thanks; for each other, the lovely food in front of us, the fact that we all had a home. We made a toast to our father Ollie Olson, who passed away from pancreatic cancer seven years earlier, on Thanksgiving day. And we thought of all our other family members who were celebrating Thanksgiving in their own way.

I do, of course, have an album to share as well as some more particulars. But first, a lovely group portrait taken with Greg’s camera. However, sister Bink actually snapped the shutter, so I guess this one is hers:

David, Linnea, Amanda, John, Greg, Zola, August, Peter and Jemesii

David, Linnea, Amanda, John, Greg, Zola, August, Peter and Jemesii

The biopsy went down well

The surgeon/radiologist was Dr. Gilman, the Associate Director of Thoracic Imaging and Intervention at MGH and someone already familiar with my lungs, having performed at least one (and possibly two) of my previous biopsies. He is kind, calm and possesses the sort of delicate and fine boned hands that seem entirely apt for the precise operations he performs.

Prior to the procedure, a needle core biopsy, Dr. Gilman explained that there were two feasible locations within my lung from which to extract a sample. One of them, which could be accessed through the side of my chest, posed a greater risk as it was uncomfortably near to my heart. The better choice was a region of consolidation that hugged my pleural lining. In order to maximize the area from which the sample(s) would be taken, it was necessary to approach vertically rather than horizontally. And that meant that the needle would have to first pass through my left breast.

An IV with twilight or a lightly sedating dose of anesthesia was started, with a bit of Xanax thrown in to stave off any possible nausea. My left side was propped up until I was lying at a vertiginous tilt, and I was securely strapped in place.

As they prepped the skin around my breast, I began to feel the effects of the sedation. Usually, I’m easy when it comes to anesthesia, however, I managed to hover on the edge of awareness for much of the procedure. I knew I was moving in and out of the CT scanner and also recall seeing the CT image displayed on a screen; the outline of my breast pierced by a long needle reaching into my lung. Surprisingly, I was also occasionally cognizant of pain, and even flinched once–not something you want to do when undergoing a needle biopsy. After that, I focused on holding still, and, perhaps because I was rather emotionally detached, found it easy to do.

At some point the nurse asked if I’d like additional Xanax–I believe I mumbled yes and then immediately nodded off. I stayed asleep until it was time to take me for the first post procedure x-ray. The next couple of hours were less comfortable, as I was now wide awake and needed to lie on my stomach without speaking. The orderly who brought me back from radiology had forgotten to hook up my call button and I really, really had to pee. David popped his head in and I whispered my urgent need. A bed pan was brought; a less than optimal solution under any circumstances. This one proved to be of inadequate volume, and a change of bedding was required. Oh, the indignity.

After one more chest x-ray around 3pm (checking for pneumo-thorax) I was given the all clear. Dr. Shaw had come around earlier to say the procedure had gone well, but as I couldn’t ask questions, I didn’t get a lot of information. However, Dr. Gilman stopped by before I checked out and explained that he had in fact been able to get numerous core samples–each a sliver of tissue but hopefully laden with cancer cells. He also said it hadn’t been easy as my breast tissue was exceptionally dense, something that I am well familiar with and that has posed a challenge at my yearly mammograms.

So home I went, groggy and sore of boob. Dr. Shaw called that evening and said that it appeared there would be enough tissue for gene sequencing and a mouse model as well—actual cells from my cancer would be implanted in live mice. Ethically, this causes me some pause. However, if a successful mouse model is established, potential therapies could be tested for efficacy before actually being administered to me, and that is hard to quarrel with.

Now, we await the results.

And this is where the road forks: 12/12/12

L1020594Tonight I will take my final dose of LDK378. At 7 am sharp tomorrow morning, I will report to radiology/surgery to get prepped for a needle core biopsy. I am hoping that it is uneventful (no pneumothorax), and successful: that sufficient cancerous tissue can be harvested and that the mechanism of my resistance will ultimately be determined. Also on the table–possible gene sequencing.

It’s been a good run; about fifteen months on LDK. I am exceedingly grateful for this deposit in my time bank, but I look forward to the possibility of ramping up my quality of life again. As it stands now, I will be starting chemo (carboplatin/alimta) next week, so it’s a given that I am going to feel worse before I possibly feel better. I’m taking the long view though…

My instructions for tonight include NPO after midnight. I know this means I should refrain from eating or drinking, but I decided to find out what the letters actually stand for:  Nil Per Os. That’s latin, but I’ll take a wild guess that it does in fact mean nothing by mouth (or NBM in english!).

Tomorrow’s date is 12/12/12. There will be more than the average number of weddings, induced labors (who doesn’t want a lucky baby) and lottery tickets purchased as well. I like to think it is an auspicious date. But it seems I almost blew it; my go-to-biopsy outfit was to be some black yoga pants. However, according to numerologist Swetta Jumaani in an article from the NY Daily News, “Black is a very inauspicious color,”……. “Something bad always happens.”

Out with the black, in with something colorful and not unlucky.

Fellow travelers: Thao

A continuing source of strength, inspiration, sometimes sorrow but always joy, are my relationships with others who are battling cancer. Although our paths are often very different, they can intersect in meaningful ways.

Among my fellow travelers is a young woman who is quite special to me. Having met online, we have built a relationship via personal messages. Only thirty two, my friend Thao was diagnosed with advanced lung cancer four months after the birth of her young son. Over the past three years, Thao has undergone just about every conceivable treatment in an attempt to arrest her cancer, including numerous clinical trials. Often, her life has hung in the balance. But Thao is tough, and I have learned to never underestimate her commitment to surviving.

IMG_0024On Wednesday Thao’s nephew Bon drove her to Boston for an appointment at MGH. Having exhausted most treatment options, she is hoping to participate in an upcoming clinical trial; enrollment is still weeks away. After the appointment, Thao, her nephew and I met at a restaurant in Chinatown called Shabu-Zen. Over an asian hot pot meal, I learned more about Thao and her extended family and what motivates my petite but formidable friend. Before saying goodbye we asked Bon to snap a photo of the two of us on my iPhone.

L1020585

Not only did Thao insist on buying my lunch, she had a christmas gift for me as well. I cheated, and opened it that day. Everytime I wrap the beautiful scarf around my neck, I will be reminded of my connection to Thao. Please join me as I keep her in my thoughts and prayers.