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.

Once upon a time

L1020735In early spring of 2010, the NY Times asked their online readers a question: “How is life different after cancer?” Those who had been touched by this disease were encouraged to send in a response along with a photo, which became part of an (ongoing) interactive collage. I was an early responder in what turned into an enormously popular feature. Some weeks later, the NY Times promoted this project on the front page of the Health Section and my photo and comments were included.

The New York Times and The American Cancer Society have just published aL1020555 book, Picture Your Life After Cancer. It shares both the photos and comments from a broad sample of nearly 1500 people who have now participated. I am proud to be among them.

You can see my gap toothed grin in the introduction, along with some comments I submitted as part of an online discussion about this multimedia project and what it meant to those of us impacted by cancer:

life after cancer002

And then my original submission, which appears on page seven along with one from Cara Howell of Albuquerque New Mexico. I think they might have matched up our smiles (although she had a better orthodontist or was just born with perfect teeth):

life after cancer001

And, if you’ve not had enough Linnea yet today, I was asked by Quantia MD to talk about a doctor who had made a significant difference in my life. I chose the two very excellent oncologists I have had; Dr. Tom Lynch and Dr. Alice Shaw. I both idolize and remain forever grateful to each of them. And by the way, it is an audio presentation, which I recorded after my first 24 hours of insomnia. Until I get rolling, my voice is a bit robotic. Very careful enunciation. Have a listen if you like:  http://quantiamd.com/player/yywhviczd?cid=1689

Me again

I would like to thank all my friends from INSPIRE for sharing your individual stories. I believe by speaking out you are empowering not just yourselves, but others who have been impacted by this devastating disease, lung cancer.

Now it’s time to update my own status.

I met with various members of my team last Wednesday. Due for a scan in two weeks, they bumped it up to that day after I described my growing anxiety over steadily worsening symptoms; cough, fatigue, and bronchorrhea.

Bronchorrhea is an uncommon symptom associated with the variant of lung cancer I have, mucinous bronchioalveolar carcinoma, and it is making bedtime miserable. The moment I lay down, my lungs start to crackle. For the next 30-40 minutes, I cough, hack and spit as I clear 2-3 ounces of frothy mucus from my windpipe. It is exhausting and at times frightening as well. There is no antidote for this sort of bronchorrhea, other than treating the underlying cause, the cancer itself.

Although some of my cancer is yet responding to treatment, it is likely that a new clone or mutation has been selected out for; one that is resistant to LDK378. This scenario is suggested by the appearance of my scans, as my cancer is returning in a very different pattern than it has previously. Rather than a gradual consolidation of diffuse nodules, much of what we are now seeing resembles billowing smoke, and is likely responsible for the bronchorrhea. However, the only way to confirm this hypothesis is to retrieve some cancerous tissue.

Fortunately, a biopsy is now considered doable and a core sample shall be removed from my left lung on 12/12/12. In addition, I will take my last dose of LDK378 on 12/11 and one week after the biospy, I will start chemotherapy; four rounds of Alimta/carboplatin followed by continuous maintenance with the Alimta alone.

When I underwent chemotherapy in 2005, I had a port installed. As it is a foreign body, there is a risk for infection and there are now a limited number of antibiotics that I can tolerate, so at least initially, I shall forgo the port. Should infusion through an IV prove too difficult, we will reconsider.

So that’s the scoop, from the medical perspective.

Grandee

The next INSPIRE post is from a woman who goes by the name of Grandee and she begins by saying that “this is a two-in-one lung cancer story.” However, I would say that there are many layers to her tale, as cancer moved through her life like a hurricane. Meet Grandee:

I was a farmer, college instructor, founder and chief administrative officer of the state breeders association, mother of two, grandmother of two, and wife. Suffice it to say I was a very busy person.

Quincy Snigging 08fMy story begins with having an enormous degree of fatigue. In 2008 I began resigning from volunteer positions that meant the world to me, but I just didn’t feel well enough to do justice to the jobs. I quit showing animals at the fairs in my home state as I was physically unable to continue doing this. I began seeing one doctor after another and despite the fact that I was a 40 + year smoker no one saw fit to do a chest x-ray. I had two major surgeries (gallbladder and rotator cuff) and two small surgeries for removal of colon polyps in 2009.

Beginning in 2009 my husband was seeking treatment for hip pain. They injected the joint with steroids, prescribed many drugs, and referred him for spinal injections. All this before a simple chest x-ray was done. When the doctor finally decided to do a chest x-ray they found several tumors throughout both lungs and follow-up x-rays showed a large tumor involving all seven bones of the hip. We were called into the doctor’s office on Christmas eve 2009 to hear the news. Metastatic lung cancer (large cell type) was what had been causing his pain. He was already in such a weakened condition the oncologist did not want to treat the cancer. He only wanted to do palliative radiation for the hip. My husband insisted on chemo and received 3 doses, each one putting him in intensive care. In March the oncologist finally said he would not prescribe any more chemo. By the end of May my husband had lost his battle with lung cancer.

After the dust settled from the events surrounding my husband’s illness and passing I returned to the doctor in hopes of determining what was wrong with me. I had now lost almost 20 pounds which I blamed on the stress of caring for my husband and the number of meals I had missed as a result. On this go-round the doctor did a chest x-ray right off. On September 10th I was told I had a large nodule in my upper left lung. CT and PET scans were done and followed by a needle biopsy. By the 23rd of September I was diagnosed with NSCLC (adeno type). I was told that the size of the tumor (7.8 cm) made me a stage IIIB. I now had lost 28% of my body weight.

My employer immediately demanded I bring in a letter from my doctor saying I would be able to finish the semester. My doctor, at the time, was so convinced I would die in less than 6 months that she refused to give such a letter. Despite the fact that I was an 18 year employee of the college I was terminated. I proceeded to apply for disability which was approved in four days. The bad news continued with the fact that my eligibility began the following month in which application was made and there was a six month delay from there before benefits would be paid. So it took seven months to get the first check. More bad news came with the fact that when you are on disability there is a two year waiting period for Medicare. That is two years after you receive your first payment, which is really 2 ½ years from when they agree you were in fact disabled.

Like most cancer victims upon diagnosis I went immediately to the internet, but I found tumors like mine were being removed by numerous doctors all over the world. I pushed and pushed till finally one doctor did some research and found a surgeon less than 200 miles away that did these procedures. This surgeon reviewed my scans and agreed to see me. My surgery was then scheduled, an en bloc chest wall resection with left upper lobectomy which was done on January 6, 2011. Besides removing one lobe of my left lung, they removed two ribs which had been invaded by the cancer. An artificial chest wall was created and I was released from the hospital in three days. It is now about a month short of the two year anniversary of my surgery and more than two years since diagnosis. As of October 30th there was no sign of cancer.

While I am still alive, my husband is gone and I had to sell the farm and the animals, not just for financial reasons, but also because I am no longer physically capable of the labor required. I am also no longer able to work and I have very little to fill my time. This disease, even with the most positive outcome, is completely devastating.

Here you have two lung cancer victims who were sick and seeking treatment for months (and in one case for over two years) before a simple chest x-ray was done. And both cancers were, in fact, discovered by those chest x-rays!

According to the National Comprehensive Cancer Network lung cancer is “first in death rate and last in research funding.” Does this sound like it’s the way things should be?

Grandee (the one behind the long ear)