Monthly Archives: December 2012

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)