The Chemo Diaries: Year 3 Begins!

December 2014 marked the beginning of my chemotherapy, and two full years are now complete. This already puts me well beyond the “statistical expectation” for continuing to kick around, allowing me to enjoy another holiday season with my family and, for better or worse, getting me closer to my goal of actually going back to work full-time at some point in the (hopefully not too distant) future. A third year on chemotherapy may have seemed like a remote option at one point, something that was a distant hope not to be taken for granted, but now is an accepted part of my ongoing plan, the “new normal” that has been often talked about, what I have simply become quite used to in my daily existence.

 

Me walking around Disneyland with pneumonia while celebrating the results of my most recent CT scan.

So I take a moment to sit in my gratitude for what modern medical science has afforded me. As I write this, I am one day past my infusion, feeling only moderately tired because I woke at 3:30am and was unable to get back to sleep due to the way my steroids get my brain spinning in the night. Ironically, that same effect does not seem to occur during the day, when my mental capacities tend more toward fatigue and fog as the hours progress. Chalk that incongruity up to sleep deprivation, I suppose. The good news is that the steroids will have mostly worn off by tonight and, with any luck, I’ll be back to sleeping — or at least being able to go back to sleep — mostly through the night.

And yes, I went on plenty of rides. Can’t get me enough of those perilous romps through neon storybooks.

A month or two ago, I had a discussion with my oncologist about how I felt fewer side effects from the chemo, as though it had become progressively easier for me to tolerate over the past year, and especially over recent months. It gave him pause because, he informed me, the body does not generally “learn” to process the chemotherapy drugs more efficiently and patients do not build up a tolerance to the chemicals. If that were happening, for whatever reason, it might indicate that the drugs would no longer work due to being processed out of the system too rapidly. My most recent scan, taken last month, clearly indicated that the chemotherapy is still working the same that it had been — so obviously the infusions are effective at doing what they are supposed to be doing. The observation that I am left with, then, is that most likely I am simply used to dealing with the symptoms to a greater degree. Drilling down a bit more, however, there have been a few changes made in my routine after the infusion, specifically trying to be more active even on my more difficult days. My oncologist confirmed that this approach was most likely responsible for how I am “recovering more quickly” than I had been earlier in my treatment.

For this reason, I recommend to any cancer patient that they get up and about as often and as early as possible following treatment — even if it is just pacing about the room. I love bouncing on my small trampoline that I keep in my office, especially if I have no time for outdoor activities.

As far as nausea goes, which is typically one of the more common side effects (and one of the main reasons for the steroids, along with preventing allergic reactions), I have a mild queasiness that comes and goes for a few days, coupled with an odd on and off insatiable appetite. It has been a long time since I quite taking any additional anti-nausea drugs and almost as long since I cut back my steroid use to the bare minimum as I got used to the digestive rhythms. Granted, the first three months of treatment included two additional drugs that were much harder on the digestive tract. But as far as nausea and constipation are concerned, these have definitely improved in general over time. While every cycle is at least someone unique and probably has something to do with outside factors (other health issues, levels of exercise and sleep, what I happen to be eating), I can definitely point to a consistently easier time in this area. It isn’t a perfect line on the graph — there are spikes and dips as my tolerance rises, but much like the trend in climate change, every cycle points to an upward tick.

Looking ahead to the coming year, it seems safe to expect a lot more of the same. If anything, I’m sure that my tolerance for treatment will simply level off about where it is right now. And if it does, I’m perfectly fine with that. In this regard, I’m quite satisfied and feel exceptionally fortunate. I know what works for me most of the time. I know to eat a lot of vegetables with a heavy focus on salads while also ensuring that I keep my protein intake high. I know that I can manage my weight better now, too, because I have a solid grasp of how I am feeling, how I burn my calories and that I am finally able to get myself somewhat back into fighting shape.

I might never have my “old body” back, but then how many of us do? I’m just trying to get back into the clothes I haven’t already sent to Goodwill. But this is another area where I was rather fortunate: because of my dietary approach early on, I gained rather than lost weight. And because the chemotherapy was working, this weight gain was a sign of success. One thing you absolutely do not want to do while undergoing chemo treatment is to lose a lot of weight. That is often a sign that your muscle mass is being used to generate glucose to feed your brain and, in the process, also feed the cancer. Plus it puts a strain on your immune system and ultimately redirects a lot of your body’s energy in ways that are not productive for staying healthy.  At my current rate of exercise, however, I expect that I’ll at least get to button all of my remaining pants within the next few months. I’m already more than halfway there, thanks to a brief bout of walking pneumonia over the last two weeks. Those spasmodic coughs really do have their upside, though I’d rather have them from a case of bronchitis. Now, if I can just get myself to start with sit-ups or crunches again, to keep that momentum going on the abs…

The coming year does bring some trepidation, too; aside from the possibility that my chemotherapy will stop being effective — or more accurately, that my adenocarcinoma will mutate in such a way that it isn’t kept in check by the Alimta/pemetrexed any longer, and thus the cancer progresses — I have a greater concern over how the health care laws will affect my ability to maintain adequate insurance coverage. With the incoming Trump administration intent on rolling back patient protections (in spite of some statements to the contrary, the thrust currently appears to have returned to a full repeal of the Affordable Care Act and the gutting of Medicare and Medicaid), I have strong reasons for concern. I’ve written about this previously on Facebook, but here are my two most strongly worded posts that detail my concerns. The first is from November 5th, just before the election. The second is from November 9th, the day after the election. If you’ve read them on my Facebook page already, feel free to skip the gray boxes here.



November 5

Admittedly, I'm feeling a bit emotional today. It's a combination of the week's chemo, which always makes me a little more "responsive" to sentiment, the proximity of our inaugural walk to raise funding and awareness for lung cancer, and the continued political rhetoric being spewed forth by the media as it hypes this extremely important election in the worst possible ways.

I want to make something very clear -- it is something that has weighed heavily on me for months, more so as we have gotten into the early voting period. I've had a lot of time to think about this and look at the reality of what molded my opinion. And I really want you all to think about this.

Cancer treatment is very complex. It is expensive and we have an imperfect health care system within which we must operate in order to achieve positive results. I know that there is a lot of animosity out there about the Affordable Care Act (aka "Obamacare"). But without the ACA, there is very little doubt in my mind that not only would I NOT be walking at the Breathe Free event on Sunday (much less speaking before the event), but I would very likely be dead by now. I'm not exaggerating about this -- the prognosis was terrible when I first learned of my cancer and the state of the insurance industry prior to the ACA would have allowed my treatment to have been denied for an option that would not have worked for me. I could also have very easily been denied coverage entirely. But that has not been the case. By Tuesday, the people of this already great and amazing country that has been first in so many areas will in many ways decide whether people like me are worth saving.

That may sound maudlin to many of you, but here is a fact: only Hillary Clinton has proven to be a viable candidate who also supports protecting patients' rights and ensuring that we ALL have access to the treatments we need. The system is not perfect yet, the ACA is a highly flawed and overly politicized document. But Trump has committed to undoing it entirely and wants to completely privatize healthcare. Gary Johnson goes further, with the Libertarian platform on privatizing not only healthcare but ALL public services like fire, police and emergency services. Both of these men would actively push to undo the social protections that we already have in place rather than try to improve upon the existing infrastructure. A vote for EITHER Trump or Johnson is a vote not against Clinton, but against people like me. In essence, it is a vote for people like me to die. I take this personally. I admit it. Especially when I am a raw nerve like today.

It isn't like I don't get the appeal of either Trump or Johnson. But I have spent time on this. My opinions are not based on sound bytes or Aleppo moments or any of the nonsense that the network news shows have focused on. I've followed Clinton for 25 years. I have dealt directly with operatives from the Libertarian party over more than a decade of third party networking. And I've been very aware of Trump as both a celebrity and businessman for even longer -- not to mention that I have a number of friends who have had occasion to meet Trump socially, none of whom have had a good thing to say about the man or his policies. But I get the appeal. I understand the angst. And I truly wish that more people were able to see beyond all that smoke to the singular fact that Hillary Clinton is being elected for a JOB that she is uniquely and amazingly qualified to do, regardless of her personality (and in some ways even more so because of it). I am a registered Independent and I always have been. I hate partisanship. I do not vote along party lines and I never will. But I WANT her to be our President and I have for years believed that she deserved the job. I think she will outshine her predecessors. All of that is my opinion that existed BEFORE I was diagnosed with cancer, over two years ago.

But now it is undeniably more personal. And I never -- NEVER -- imagined that it would reach this level, because I never for a moment considered a Trump win as a viable option. He's a terrible human being -- and this isn't about his personality, but about his ACTIONS and his STATEMENTS. He is a bad man. He will do bad things. To think otherwise is to ignore his history completely -- and any suggestion that Clinton's ambition or self-service is in any way comparable is a YUGE false equivalency. This is not apples to apples in any reasonable sense. She might be politically or morally gray in some respects, but he is just downright awful and untrustworthy and unreliable and, frankly, unknowledgeable.

So I beg you -- all of you -- to get out there and vote. Vote for the candidate who will be best to lead our nation, who will be best to do the JOB, and who will also be someone willing to work with others in government to continue upon our SUCCESSES without creating more horrible circumstances for more people. We already live in the greatest nation in the world. Let's PLEASE keep it that way. And let's do it in RECORD NUMBERS. VOTE, VOTE, VOTE (just once per person, obviously, but with massive gusto). Vote loudly and help to spread a message that we stand for reason, stand for intelligence and stand for higher standards. Vote to send the message that we DO need CHANGE, but without forgetting that real change happens slowly and pulling the rug out from underneath just trips up the system until the most powerful rise back to the top and attain even more control over an already unbalanced scale.

And I ask you all to remember that, whatever you think of me, I am here on Earth doing the best I can to be the best person I can be, to help others and to be a productive member of society, but that under a Trump or a Johnson Presidency that WOULD NOT BE THE CASE. I owe far too much to the ACA to be able to deny the impact it has had upon me or my family, and I have seen the benefit it has had for other patients, and I know it can be fixed under a Clinton Presidency to become more equitable for all. There is a lot of work to be done. But we are AMERICANS and we do not just throw in the towel and expect someone else to mop up the mess, do we? That isn't the America I have embraced. I hope it isn't the one you want. We WORK to fix the system. We WORK to make the best country we can for EVERYBODY. That means rejecting Trump. It means rejecting Johnson, too. And it means uniting behind Hillary Clinton and COMMITTING to applying PRESSURE to her to do the best for all of us every step of the way.


November 9

I want my friends who supported Trump (especially those who consider themselves to be "pro-life") to please read this and understand something. I've written about this before and today had the opportunity to confirm the likelihood of this being the case. It's one (but not the only) reason why this election was personal to me in ways others have not been. Because a vote for Trump is, in a very real sense, a vote for me to die.

I am alive today because of the Affordable Care Act. Not because I was poor and disenfranchised, uninsured or destitute. In my lung cancer support group this morning, I had the opportunity to discuss this further with my nurse navigator. For those who don't know, the job of a nurse navigator includes dealing with insurance companies to cut through red tape and get approvals for treatment that are otherwise being denied. It is a very difficult, highly specialized job, and the woman I work with is exceptional at it. But she was clear with me today in confirming what I had written about before.

If not for the ACA, I would most likely have been dropped by my insurance company before ever beginning treatment for my lung cancer. And before jumping on the "you shouldn't have smoked so much" bandwagon of victim-blaming that is so prevalent in the area of lung cancer, let me be clear that I did not fall into a single risk category for my disease. I'm a non-smoker, I have no genetic history of the disease, I'm extremely healthy otherwise and I've never worked with or lived near any known risk-inducing situations. The worst thing I've done is live in a city, with millions of other people, breathing the same air. But my prognosis was expensive, and private insurance prior to the ACA would have allowed for me to be dropped, just like that, because there is some probability that the cancer was there prior to when I signed up with the company that insured me.

But let's say that they didn't drop me for some miraculous reason. They still could have raised my premiums to the point I couldn't afford it. Still not a death sentence right away, though it would have cost me our house. The real kicker is that the drug that has kept me alive and well would never have been presented to me as an option. I would not have been allowed my oncologist, who is not beholden to cost because he does not work for the physicians' group paid by the insurance company. And the care that would have been offered through insurance would have gained me some months, certainly, but in a much more painful way and without the ability to go long-term on it. At best, I might just be getting buried now, but more likely it would have been sometime last year. So if you're thinking that you voted for Trump because you are pro-life, think about this. Because if he REPEALS the ACA on the first day in office, as he has proclaimed both in speeches and on his website as his number one priority, then my care and the availability of the more expensive drug that I take to keep alive will very likely go away. The estimate of my time left on this planet, with my family, with my "friends," could be measured suddenly in months instead of years.

That is what a vote for Trump means to me. It is a vote against life. It is a vote against the social progress of removing power from insurance companies and putting it back with real people. It is a vote against science. So, think about that. Think about if I wasn't just another name on your "friend list," but rather a sister, brother or spouse. Or your child. Would you have voted for a man who made it clear that the single most important action he would take meant dismantling the one thing that allowed your son or daughter access to a life-saving treatment?

Once you've let that that sink in, I hope you take the time to reach out to your representatives in Congress, because if you care for me at all or for people like me (and there are more of us than you realize), there is still time to turn the tide. Trump cannot undo the ACA alone. He needs Congress to help. Unfortunately, Congress is now controlled by Republicans, many of whom have also sworn to repeal the ACA. But if you demand that they IMPROVE the ACA to expand patient protections rather than repeal it, then maybe you can show that you are pro-life after all. But don't just do it for me, because I might be able to find another way somehow. I'm resourceful and I have a strong family to back me up, and I'm not afraid of dying if that is what it comes down to. Instead, do it for that brother, sister, parent or child of yours who has not yet been diagnosed -- but roughly 4 out of 10 of them will be. It's between your household and your neighbors on either side. Which of them is worth saving? Which of them did you just vote to let die?

If I haven’t lost you yet, I want to clarify that my statements in those Facebook posts have been backed up by numerous discussions with healthcare professionals, social workers and patients who attribute their lives to the protections that had been offered by the ACA. This is no insignificant issue for us, for our families or for our loved ones. Because of the ACA, thousands of people who might otherwise be dead or suffering can instead remain productive members of society, contribute to our culture and return as vital parts of the workforce. No doubt my year ahead will include an increase in social responsibility and political activism as I strive to both educate a population afraid of “socialized medicine” (which the ACA is not) and advocate for progressive healthcare reform that will ensure the positive attributes of the ACA are improved upon rather than simply thrown to the wolves of privatized industry. No matter how I look at it, however, and in spite of my apparently improving (or at least stable) health, the coming year will be more stressful than the year I am leaving behind.

This does not shake my optimism because I still believe that most people want to act for the greater good. It is more a matter of education and awareness — things that, regarding lung cancer specifically and cancers in general, are still lacking among the general population — than it is a matter of people wanting to do the right thing. Dogmatic beliefs about everything from fiscal conservatism to religious fundamentalism to socialized government get in the way of productive discussions that can lead to real solutions. Unless people can leave their preconceived notions behind, make the assumptions that what they believe in might actually be wrong and agree to work together to find a central truth, we will have no progress. We will not be a great nation any longer. And it is very, very hard work getting people to let go of dogma, of ingrained beliefs that the individual equates with knowledge. But belief and knowledge are not the same things, and understanding this is paramount for forward momentum and finding workable solutions.

That said, I believe that we will see success from a grassroots movement over the coming months to save the programs, hopefully improve upon them, that offer protections to those who need them most. I believe that in spite of the early indications from Trump’s Cabinet and departmental head selections, the popular will of the people still can turn the tide when it comes to policy decisions. The individuals currently set to fill roles in the Administration appear predominantly positioned to either push their own narrow agendas (often counter to the role of their department) or bolster their personal financial reserves through the actions of their office, but a vocal citizenry has the power to change that. My hope is that everyone reading here will consider being a part of breaking through political differences to find common ground for the greater good. And I hope to look back in a year and be able to say that I know we were successful in that regard, that I was right about the good will of the people and their resolve to keep this country great.

On other fronts, I am looking forward to ending Year 3 with an expanded Breathe Free Walk to End Lung Cancer. While still supporting the original location in South Carolina, it is my hope that the 2017 Lung Cancer Awareness Month will include a West Coast walk here in Los Angeles as well. It is a tall order to put together with only a year to prepare and no real resources as of yet, but a goal I am already working on getting others excited to be a part of. I am also planning to complete a draft of my memoir about this whole “Cancer Journey” thing I am going through, and hopefully, see my last novel get exposed to the light of day. There are a lot of items still to be checked off my “to do” list over the coming months and that list never seems to be shrinking even when those checks occur. I suppose that’s a positive sign. After all, life is about participation and it’s good to see that list remaining active.


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2 thoughts on “The Chemo Diaries: Year 3 Begins!

  1. I just want you to know that I admire your positive attitude. My friend went through a similar regimen as you, and her positive attitude and sheer courage and determination helped her so much. She enjoyed every moment she had and was a joy to be around. Good luck to you.

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