Tag Archives: Chemotherapy

How My First Year of Chemotherapy Changed My Christmas Wish for You

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The holidays are upon us and I am sitting at my keyboard two days after my latest infusion, my brain awash in a heady mix of chemo drugs and residual steroids. I can feel the moisture in my nasal passages dissipating as it tends to do at this time, my eyes drying up along with them. Food doesn’t taste as profound and I gravitate toward sweeter options just to find them more palatable, or more bitter options because that bitterness is only intensified. But aside from a slight sleepiness that keeps threatening to overtake me, I’m actually feeling pretty good, very happy and more or less alert… And I’ve been thinking about this whole holiday thing since I was in the chair at the clinic, watching the drip come slowly down that long tube.

Snowman Believe
This snowman has some good advice at his fingertips.

I’m a big fan of Christmas. Always have been. Not the commercial side of it, so much, but that is because consumerism and gluttony always rub me the wrong way. And not the religious side of it, so much, because dogma rubs me the wrong way, too. But the spirit of Christmas, that I do love. The concepts of peace, unification, giving — and taking the time with family and friends to focus on the love, joy and small miracles of life — these are very good things, indeed.

Every year I try to look at these positive elements (that should be) exemplified by the holiday. I think it is important to contemplate the meaning of Christmas, even from a secular perspective. This time around, there is little doubt that my views and my wishes have been influenced by my treatment. Here is my Christmas wish for you. Continue reading How My First Year of Chemotherapy Changed My Christmas Wish for You →

The Chemo Diaries: Year One Retrospective

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It has been slightly over one year since my diagnosis, and I am in my twelfth month of chemotherapy infusions. I find it fitting that this timing coincides with Lung Cancer Awareness Month. To celebrate, or honor, or whatever you do for these types of anniversaries or milestones, I have decided to take a look at the previous year in pictures. This isn’t so much a vanity issue, though you will notice that the pictures are basically just of me, usually smiling and trying to look presentable; the greater point of the images is to watch the progression (or, occasionally, lack of it) in my appearance from infusion to infusion.

In November of 2014, I received my diagnosis after several months of feeling ill (for mostly unrelated issues) and having little or no energy or stamina. Ironically, when the testing and scanning began in earnest in September, I had begun to incrementally improve. Every time I was irradiated for a glance within, I left the imaging center feeling better. My breath had been quiet short in August and September, but by October I was noticing an improvement — a small improvement, but enough of one to give me the notion that I was “getting better” from whatever was ailing me. Still, I wasn’t in the best of shape, and I had been spending the previous months worrying progressively more about just what could be going on in my lungs. I had spent more time doing research on the Internet than I probably spent in the college library system during my entire four-year stretch. (Okay, not just probably; I did not take advantage of the old stacks the way I should have, and that remains one of my biggest regrets about those college years — funny the things we grow nostalgic for as we “mature.”)
Continue reading The Chemo Diaries: Year One Retrospective →

Advocacy and Enlightenment on Lung Cancer

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Shine a Light on Lung Cancer — Event Recap

I just returned from seeing the folks in my lung cancer support group, where we were treated to a recap of the Shine a Light event from this past weekend. I got to see my speech all the way through for the first time, projected on a big screen in the conference room where we meet, and I’ll admit that I made myself tear up a bit there. It’s like I was speaking directly to me. And it made me realize how much I could have benefited from an actual stylist, but I suppose that is another story.

Shine a Light on Lung Cancer at Huntington Memorial Hospital
Let’s play “Who’s Doing Chemo?” among these three gentlemen… Here’s a hint, left to right we have: Robbin Cohen, MD, medical director for the thoracic oncology program, Jorge Nieva, MD (my esteemed oncologist), myself (the lung cancer patient)  and Christine Conti, RN, nurse navigator for the Huntington Hospital lung cancer program, who brought my medical team together. If you guessed “the guy with the hair,” you’d be winning big prizes right now. If there were prizes. Sorry, no prizes. But thank you for playing.

There were 147 people in attendance for this lovely event; next year I am hoping that we can inspire something new, like a walk organized through Downtown Los Angeles with 1,000 or more people participating. High hopes, perhaps, for an often stigmatized illness. But this is about changing perception and bringing the narrative into the 21st Century.

In the meantime, please consider supporting this petition for increasing research funding, and please share it with your friends and social networks. Nothing progresses without sharing — it is the only way to truly increase awareness. There needs to be a greater discussion around lung cancer, and around cancer in general, so that people can begin to understand what this condition truly is and how it can be safely and effectively lived with when treated early enough and with proper medical care.

Too many people are still living with a fear-based paradigm about cancer, rooted in outdated treatments and late detection. Hollywood is still making movies about what cancer was like decades ago and the scientific journals are too dense or obtuse for laypeople to easily digest. TV personalities like Dr. Oz are still offering false hopes and pseudoscientific claptrap for easy ratings by promoting dietary cures and other nonsense rather than speaking truth about the rise of medical science. In fact, Dr. Oz and his guest Dr. William Li play fairly fast and loose with the notion that the foods they recommend can actually prevent or treat cancer. The sheer volume of food that would have to be consumed to even come close to the results they imply would be difficult to tolerate at best. Continue reading Advocacy and Enlightenment on Lung Cancer →

Shine a Light on Lung Cancer November 8, 2015

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I was asked to speak at the Shine a Light event at Huntington Hospital in Pasadena, CA. Below the video is a transcript, for those of you who like to read. The event certainly was not about me, and I will link to more info on the ceremony when it is posted and available, but in the meantime here is a small portion for your viewing enjoyment.

One year ago yesterday, I wrote my first blog post about lung cancer. I had just been diagnosed with inoperable metastatic stage 4 adenocarcinoma. That was a pretty long name for an ominous sounding condition that I knew relatively little about. People all around me — and it seemed everywhere across the Internet — were ready to express what a dire situation I was in. But I’m here to tell you that I feel great. Today is a fabulous day. Tomorrow I am going in for another infusion, a little bit of what I like to consider my “me time.” Granted I’m on maintenance therapy now and I kind of miss the longer treatment that I used to have, because it allowed me to get some work done on the blog or do some quality reading or catch up on my email. These days, my infusion happens too quickly to get much accomplished. But… I really can’t complain about that. Continue reading Shine a Light on Lung Cancer November 8, 2015 →

Lung Cancer Answers and Awareness Support

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As a frequent contributor to Quora.com, a website for asking questions and getting answers from people who are knowledgable about the subject, I have naturally offered input on issues related to lung cancer. After all, one of the first rules for authors is to “write what you know.” Here, in honor of lung cancer awareness month, I am collecting links to some of the answers I have supplied on Quora.

  • Read on below the links for more on Lung Cancer Awareness

Some of these questions have many answers and mine might be somewhere down the list, but generally all of them make for interesting reading and good perspectives. Popular ones may have been “upvoted” quite extensively (this could also be the case for older answers while newer answers with more merit may have few upvotes simply because fewer people have viewed them). Also, a lot of the answers are quite brief. Occasionally I do get a bit long-winded, but my contribution to the discussion could be just a few sentences or paragraphs. Overall, however, I think that these questions and answers make for good reading in a format more like a town hall meeting than a typical blog. Continue reading Lung Cancer Answers and Awareness Support →

My Frenemy, Dexamethasone

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When initially discussing chemotherapy treatments, most people begin with the thought that it is the chemo drugs themselves, those infamously toxic concoctions, that the patient would complain about most, or fear, or suffer from. And chemo does suck, what with the potential for nausea and fatigue and that notorious chemo brain. But do you know what really sucks, dear Reader? Steroids.

I recognize the importance of the Dexamethasone pills I take for three days at the start of each infusion cycle. And I appreciate that I am not taking Prednisone, which some of my friends have been saddled with for lengthy periods of time and which I had seen turn my father’s final years into a much less pleasant time than they should have been. I owe a debt to Prednisone, without which I would not have gotten ill enough to eventually lead to my cancer diagnosis, but I will never take it again. Dexamethasone, on the other hand, I can deal with. I don’t like it, but I understand the need to make my peace with the sleepless nights and mild dizzy spells and increased irritability, the hoarseness and seemingly endless peeing. Continue reading My Frenemy, Dexamethasone →

The Give and Take of the Support Group

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I met some nice people today. People who I would not normally have crossed paths with in my daily life. They were a happy, optimistic bunch, or seemed so to me, in spite of the circumstances that brought us together for the 90 minutes allotted this morning. Most of the small group knew each other, but were largely strangers to me when I walked into the room. It was my first time attending a cancer support group.

I had no idea what to expect from the meeting. The truth is, I had not been in any particular rush to attend; my impression of such a gathering was based on flimsy Hollywood portrayals, and that fuelled more by onscreen AA meetings than anything else. The coordinating nurse who ran the meeting was also the person responsible for setting me up with my oncologist and taking care of most of the administrative functions revolving around my early care from the point where my tumor was identified until I had begun my chemo drips. And she has been a part of the process since, if not directly, keeping tabs on me and checking in now and again. She had asked me on several occasions if I would attend a support group meeting and I had always put it off, thinking that I was doing fine and so, really, it wasn’t something I really needed to do.

Then she sent me a flier, with a personal note at the top, and I went and put the date in my calendar. And then there I was. Continue reading The Give and Take of the Support Group →

The Chemo Diaries: 10 Months

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Let me just start by saying I feel great. I just had another CT scan about a week ago and it is showing clearer edges to the main tumor, some puckering in the middle and overall indicates good progress. Yesterday I had my infusion of Alimta and for a nice change of pace I have cut my steroid use in half — which so far is going quite well for me. I am not a fan of steroids and this was one of my top objectives. The result has been a clearer head so far, a bit more sleep and less swelling of my feet, which translates to a nice win in my playbook. All in all, I am quite pleased with my week.

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The only downsides are things that probably won’t be issues for a while, possibly a long while. One of the effects of infusions is that slowly but surely veins collapse. I always had marvelous veins for drawing blood but they have taken a heap of abuse over the past year and a half. The labs approved by my HMO tend to use the biggest needles possible for the fastest draw and while that never bothered me before, the chemo had made it so that I bruised easily and had to rotate veins every few weeks just to avoid issues with leaking. It wasn’t until about eight months in to my treatment that a nurse in the infusion clinic asked me why I didn’t just request butterfly needles… The veins are much less prone to bruising now. Who knew?

Still, the veins are a bit of an issue. I still have plenty to experiment with, but we had to move from the arm down to the hand for this last round. My hand veins, possibly due to my normally low blood pressure, stay fairly plump most of the time, making them good targets. But it got the nurse talking to me about putting in a port one day, just to make things easier. Such a port would be under the skin just over my heart, kind of a permanent plastic plug right into my largest vein. Supposedly that would be good for a few years of constant use. Still, it isn’t something I am in a rush to do.

But a few years or more is certainly what I am looking at right now. While no one will put a timeline on anything regarding treatment, my oncologist did say that he expected I would remain on this current regimen for a fairly long time. That is pretty good news in its own special way. Of course, the main reason for switching off it would be the commercial availability of PD1 therapies. We are eager to try those, but not so eager to qualify for clinical trials, which would require progression of the cancer after the failure of my current chemo. For now, that wait is a good one.

Perspective: One of the Greatest Gifts of a Cancer Diagnosis

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I was skulking around the house last week, ruminating on just how bad I smelled. My wife was getting annoyed with me, insisting that I did not smell any differently; it was a hot, stagnant summer day and I was sweating (I felt) profusely. My chemo treatment was beginning to purge from my system and it seemed to me that as I would walk around a corner or even just turn my head, I would get a wiff of something nasty, putrid, sour. And I couldn’t shake it — that smell was just plain bad.

But it couldn’t be identified, or even located. And I was the only one smelling it.

Then I started to take stock of all my symptoms, which I do now and then as both a way of monitoring my body and keeping a sense of humor about the process. Because it can be pretty gross. Let’s face it, no one likes to think of themselves covered in puss-filled sores, hobbling about on swollen feet and wafting fetid breezes from God knows where throughout the room. Continue reading Perspective: One of the Greatest Gifts of a Cancer Diagnosis →

The Chemo Diaries: More Summer Fun

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Aside from my ever diminishing veins, the infusions during maintenance continue to be easy and relaxing. I guess I am lucky in that way — I know people who have different cocktails that they have various reactions to, from rash to fever to nausea on one end and flat out groggy sleep on the other. During these Alimta cycles, I am in and out fairly quickly and my biggest complaint is not having enough time here with the heated massage chair and my morning coffee to, uh, get any real work done…

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finally time for my cup of morning joe

 

Two infusions ago this chemo drug appeared to really mess with my digestive system, but it cleared up just in time for my scheduled CT scan and did not recur with the following round. The assumption now is that I simply caught a stomach bug that lingered for a couple weeks. The whole repressed immunity thing has been on my mind lately, and not just because what probably should have been a 24 hour virus took me 14 times longer to purge from my system.

Although the ensuing three weeks were relatively symptom-free (steroids make me irritable, mess up my sleep for three or four days and make me an emotional raw nerve; the chemotherapy wreaks havoc with my joyous time travel into the land of teenage acne, but even these things seemed to lessen somewhat), the issue of immunity and, more specifically herd immunity, was thrust back front and center when we brought a new kitten home from the pound. Continue reading The Chemo Diaries: More Summer Fun →