On The Aftermath of Dealing With Cancer

On The Aftermath of Dealing With Cancer

When I started my blog in July of 2015, I was also dealing with cancer. I didn’t want to bring it up in the blog, and I didn’t include it in my “list of topics” post because, at the time, I didn’t really want to talk about it much. The cancer and the treatment had taken over so many other aspects of my life already, I didn’t want it to invade yet another space. There was already a pretty good amount of information about the experience of cancer out there: websites, blog posts, forums and communities. I didn’t have anything new or interesting to add, so why bring it up?

It’s a bit ironic then, that the return post to my blog is on the topic of cancer. In a way, it did invade this particular space; first, by draining me of so much energy that I couldn’t even think about writing anything for this blog (no matter the topic), much less actually form coherent sentences, and then again, in influencing my “return” post. But, if this is the only battle to cancer I lose, I’ll be more than thrilled.
So here I am, nearly a year from my last post (now you know why!) talking about cancer… sort of.
When I started writing this post, I almost capitalized the first letter in “cancer”. I’m not sure why; it just seemed like it was supposed to be capitalized. But then I decided that, regardless of what was grammatically correct, I refused to capitalize that word. I refuse to give it any more weight than it has already had in my life. Which is the entire basis of this post — the weight of an illness that isn’t there, of a word that no longer applies.

The good news is that I’m technically cancer-free now. I was diagnosed as Stage-2 Hodgkin’s lymphoma in March 2015 and underwent 6 months of chemotherapy. After 2 months of therapy, a PET scan showed no signs of metabolic activity. Chemotherapy was continued, but I didn’t need radiation. After my last chemotherapy session in Sept 2015, a CT scan showed no signs of the disease and my doctor declared me in remission, and sent me on my way. (In a manner of speaking. I still go in every 6 months for follow-up blood work and exams). I was cancer free, chemotherapy was over. All done, yay! Right?

Well.…kind of.
One might think that six months of chemotherapy would be considered the “worst” of dealing with it, and that wouldn’t be an incorrect assumption. Chemo, while not as bad as I had feared, was still pretty damn awful and not an experience I ever, ever want to relive.

But as deeply unpleasant as the experience of chemotherapy was, at least I knew what to expect. While it’s true that no two people’s chemo experiences are the same, and you cannot predict just how your body will react, there is at least a list of symptoms to expect. You have some idea of what’s going to happen, and for the most part, there are drugs and remedies for those symptoms. My doctors and nurses at the cancer center in Orlando were incredibly supportive, as were my friends, family, and the internet in general. There was no shortage of sleepless nights, whether from pain or anxiety, but at the same time, when I had (sometimes irrational) fears or questions about what I was going through at 2 am, I could check blogs and post to forums and have answers and reassurances, often within minutes.

Treatment might be painful and exhausting and uncomfortable in ways I didn’t even realize were possible… but at the very least I had the solace that I was actively doing something to work against and fight the cancer. The cancer is going away; I’m getting better.

 It’s the aftermath that no one talks about or can prepare you for. The doctor tells me, with a smile, that I’m considered in remission, that things look great, and to go “live my life”.

Easy for him to say. Easier said than done.

I understand his sentiment; I really do. I appreciate the well wishes.

But (there’s always a “but”)…you don’t just “bounce back” from chemotherapy. You can’t really “live your life” , at least not like you did before. I’m not trying to be all doom and gloom and say that things won’t ever be good, but they won’t be the *same*. There will always be the specter of “what if” hanging around. The specter fades, becomes less pronounced, over time. Eventually. But it still takes time.

No one can tell you how long it takes to recover. No one. Everyone is different. Each person reacts to chemotherapy differently. All of the official literature says “6–12 months” to recover from chemo, but even the literature admits that is, at best, only an estimate.

While there is a good amount of information on the web regarding how to deal with the effects of cancer treatments, I’ve found much less on the topic of recovery. There are fewer stories in the lymphoma forums from survivors, not because the survival rate is low (on the contrary, lymphoma is now considered one of the most curable of the cancers and has one of the highest rates of being cured), but because survivors just don’t visit the forums as often, myself included. I imagine it’s a mix of not wanting to relive that experience and just not thinking about it anymore.

Of course, there are bits of advice here and there, but they’re all pretty boilerplate; “Get rest, eat right, try to exercise”. For example, the American Cancer Society website, which is fairly extensive, doesn’t even have a clear section or area discussing post-treatment.

 

Recovery from chemotherapy, from any cancer therapy, from the very experience of having cancer itself, is not linear. It is not a matter of just “getting back to normal”. As much as the survivor (I, you, someone you know) wants to go back to their old life, it’s just not going to happen. Recovery, in my experience at least, is as much about healing (physically, mentally, emotionally) as it is about finding the new normal.

But there’s this sort of…guilty feeling over that failure to get back to normal. You should get back to your old life, right? You beat cancer, maybe you beat the odds! You survived. So… why aren’t you taking back your life?

It sounds silly to type it all out now, but when you’re in the moment, when you’re dealing with hormonal derangement, chemical imbalances, and pure exhaustion… the craziest of thoughts can seem normal.

In my scouring of the internet for information on dealing with the after, I found more questions than answers. There was no shortage of people asking questions about the process, but it didn’t seem there was much information to follow. It seemed there were more people, like myself, wanting help and information and just some idea of how to get through this new part of the “cancer journey”, than there were answers.

Over the past several months, I’d toyed with ideas, written and re-written blog posts on the process of recovery dozens of times. But I’d never gotten to the point of actually being able to clearly articulate and post those thoughts. I think, in part, I still had that fear that what I might say or post just wasn’t that important.

It took a friend posting about her fears and questions on the process of recovering from cancer and chemotherapy, for me to realize how important (and maybe even necessary) it is to put my own experience out there. I thought it might be helpful not only for other survivors, but for their friends and family, as well. When something as overwhelming as cancer affects an individual, it affects the other people in that individual’s life as well. In fact, a recurring theme I saw through the posts and forum discussions about the post-cancer experience was how to get the well-meaning but oft-uniformed individuals in a survivor’s life to understand what they were going through.

As much as I hate the phrase “journey” in regards to cancer, the recovery aspect is a journey. It is a long and winding road. And it may even be a journey that never really ends, but instead continually evolves.

Because even when the disease itself is gone, cancer remains a part of life for survivors and their loved ones and that continuing experience needs more openness and discussion.

No two survivors’ experiences may be the same, but perhaps, through discussing our experience and being open with your thoughts, we can help each other through the ever-winding and sometimes dark road that is post-cancer recovery.

Maybe in providing support and comfort to others, we can find it for ourselves.

If you’re a survivor, feel free to join the conversation now and share your post-cancer experiences and stories in the comments.

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One More Article About Cecil the Lion…or, Why Conservation Matters.

Cecil_the_lion_at_Hwange_National_Park_(4516560206).jpeg
Cecil the lion at Hwange National Park in 2010. Flickr.
Taken by “Daughter#3 “https://www.flickr.com/people/45912956@N06
CC BY-SA 2.0)

There has been much said about the tragic fate of the lion Cecil, killed recently by an American dentist. There has been public outrage on social media and calls for the dentist/hunter to be extradited. There have been numerous discussions likening the killing to factory farming, eating meat, the #blacklivesmatter movement, and several others. There have been articles asking why those angry about Cecil aren’t angry about these other issues, as though people are only capable of being upset about one topic at a time.

But I have not seen a great abundance of questioning or discussion as to how Cecil’s death is a symptom of the ongoing troubles animal conservation face. This is strange to me, because conservation is the core of the issue, and yet it’s the topic being brought up the least.

There are a few articles and a few bits of discussion being brought up as to current state of endangered-species conservation. But I had to seek these out, and they were not nearly as prominent as the generalized outrage, death threats, and finger pointing of hypocrisy and the rebuttal. While I can understand some of these reactions, they don’t result in anything more than people being angry.

It’s easy to be outraged, it’s harder to effect change.
Let’s talk about how we can prevent a similar tragedy from happening again. Let’s talk about the importance of conservation and education. Let’s talk about real solutions that help both the animals and humans.

Cecil’s story is unfortunately not unique. He’s getting a lot of attention because he was a well-known and particularly charismatic creature. Meanwhile, every other day of the year, conservationist organizations have to beg and plead to get people to care about and act on the multiple threats that all endangered species face.
This is not to say that people shouldn’t be upset about Cecil’s fate, nor that they shouldn’t speak about it.

But while the outrage is understandable, the outrage comes too late. Cecil’s death could have been prevented.

Cecil was kept on Hwange National Park in Zimbabwe. The park is protected land, and Cecil also had a tracking collar. It’s speculated the hunter and his guides lured the lion away from the protected land with bait. National parks use park rangers to patrol the parks, prevent and protect against poachers. The National Park relies on the Government, local tourism and assistance from Conservation organizations for funding, and Government funding has been scarce as the country is dealing with a number of troubles. National Parks, not just in Africa but around the world, including the U.S., often suffer from lack of funding. The immediate needs of the parks come first, so hiring tends to get put the bottom of this list. So would this have happened has the park been able to employ more rangers and protection for the animals? Possibly not.
It’s not as though the need for funding, outreach, and education on these matters is new. I see daily calls for funding, legal action, and improved public education and outreach on conservation websites and forums.
So it is all the more frustrating, from a conservationist’s point of view, to see such rapid, vehement response to one death in particular, when there are hundreds of similar deaths due to illegal sport hunting and poaching around the globe every day. Deaths that might have been prevented if people participated more actively in conservation efforts.
But frustration, much like rage, in itself doesn’t amount to much.
So to make better use of my frustrated energy, I say this: if Cecil’s death bothered you, channel that anger and energy into avenues that promote the change that is needed to prevent more unnecessary deaths.

Legal action is one of the best ways we can protect endangered species. Read up on the efforts and needs of organizations such as the World Wildlife Fund, Defenders of Wildlife, the Wildlife Conservation Society, or the African Wildlife Society.

If you want to do something to help lions specifically, look into the efforts of the Lion Guardians, Panthera: Project Leonardo, or the Ruaha Carnivore Project. There is also the African Parks organization, a non-profit responsible for the rehabilitation and long-term management of African national parks. (Links provided at bottom of post.)

Read about what they’re doing, and how they need support. Sometimes, the best thing that can be done is to write a letter to a senator or legislator. Be knowledgeable and up to date on current efforts and issues. Knowledge is power and all that. 😉
If you can, donate. So many others need protection. Help prevent Cecil’s death from being a complete loss. Direct the energy of your anger to more effective measures to prevent future losses.

World Wildlife Fund: https://www.worldwildlife.org/

Defenders of Wildlife: http://www.defenders.org/

Wildlife Conservation Society: http://www.wcs.org/

African Wildlife Society: https://www.awf.org/

Lion Guardians: http://lionguardians.org/

Panthera: Project Leonardo: http://www.panthera.org/node/22

Ruaha Carnivore Project: http://www.ruahacarnivoreproject.com

African Parks: http://www.africanparks.eu/

Relationship status: It’s complicated

This afternoon I was playing with some world building and magic-system ideas for my current novel and I started to get very excited about said ideas. Things were clicking into place, one idea leading to another, each neatly solving a problem. Click, click, click. My best game of Tetris ever.  With each new idea,  I got more excited; my pulse quickened, my energy levels rose. “This is why I do this,” I thought.  A little voice in the back of my brain likened it to a high, but without the troublesome side effects afterward. But immediately after that thought, I realized, no… the writer’s high does have its own dark side. It lures you in with good moments, and without warning, the trap snaps shut, leaving you alone and in the dark, wondering what the hell just happened.

And with that, the next thought…

Working on a piece of writing is like being in a relationship with a troublesome, tempestuous lover. It is the kind of relationship that everyone tells you isn’t good for you, but you just. can’t. quit.

When it’s good, it’s good. That tempestuous nature ignites something within you, an ember that fans quickly into a flame. You can’t stop thinking about them, everything reminds you of them, and suddenly, they are your entire world. You know you’re flirting with fire, but that is part of what makes the experience so enjoyable, so exciting. You get giddy just thinking about them, and when things align, you see stars.

But that very same passionate will eventually work against you, sooner or later. It’s inevitable. The flames will continue to fan into an inferno that you can’t control. Where there was once was magic and euphoria, there is instead heartache and desolation. Nothing will go right. Nothing you say or do will be good enough for your fickle, mercurial darling. There will be tears and no small touch of madness on your behalf.

And just when you are ready to call it quits, and break it off, for good this time! Your little lover will change on you again, maybe even simpering, whispering a thousand apologies. Assurances and promises will slip off their silver tongue, and there will be one final sweet offer you just can’t refuse.

And so, the process begins anew.

Is it any wonder so many writers drink and/or have gone insane?

We court insatiable, temperamental lovers, and keep coming back for more.

Oh muse, thou art a heartless bitch.

For what it’s worth, I’ll take the lows with the highs. I’m still working on those ideas I mentioned, and still excited but tempered. One might say that is the key all along: temper the flame, and don’t let it consume you. Easier said than done…

Motivation, or… “Holy cats, now I have to actually write something”

I notice that people have noticed my little blog. I had forgotten the blog was connected to my twitter account, so when I posted it sent out messages to the Twitter-verse.

Not a bad thing, really. But it’s gotten me some new readers and views already which is not something for which I was prepared.

Oops.

So now I’m feeling the pressure… to post and actually, you know, say things.

Hm.

Well, I do tend to do well under pressure (usually).

(I’m still not sure what to post about next though. My brain is drawing a blank. Thanks, Chemo.)

Here’s hoping I don’t disappoint.

Points of interest (or, Things I like )

Topics you may find discussed in this blog:
(in no particular order)

  • Molecular Biology
  • Genetics
  • Immunology
  • Conservation Biology
  • Evolutionary Biology
  • (Living with) Chronic Fatigue Syndrome (CFIDS)
  • (Living with) Fibromyalgia (FMS)
  • Gluten-free Cooking
  • Gluten-free Baking
  • Dogs
  • Pet care
  • Technology
  • Science Fiction
  • Fantasy
  • Role-Playing games (Table-top, Board, and Computer)
  • MMOs
  • Star Trek
  • Star Wars
  • Writing
  • Gothic Sub-culture
  • General Science and Geekery
  • Book and Movie reviews (see: Science Fiction, Fantasy and General Geekery)
  • Animal Behavior
  • Sociology (and ideas on human behavior)

Topics you will not find discussed in this blog:

  • Religion
  • Politics

This isn’t to say that topics are limited to the first list, or that you will never find topics in the second list mentioned. Rather, this is a general guide.

I’m not including religion or politics because they are the standard “do not discuss in polite company” topics, but more because I have no desire to discuss them.

Both of those subjects tend to carry a high amount of emotional weight and personal response with them. I’ve found that people are pretty inflexible when it comes to those subjects, and aren’t likely to change their minds or core beliefs, even if another person has a really good point.

This isn’t to say these topics aren’t worth discussing or exploring, and you may find that these topics do come up from time to time. But on the whole, I stay away from them. If I do discuss these topics, it tends to be from a removed perspective, where I explore a larger idea that happens to include those topics. (E.g. how religion affects how we make decisions, or the history of a political party)

Readers and followers are welcome to comment and discuss those topics, if they happen to come up in a particular entry, but I will ask everyone to be civil.

Discussion is awesome. Pointless arguing and attempts to persuade someone to change a personal, emotionally charged belief? That’s a bit messier, and I’d like to avoid it here, thanks.

Let’s focus on the first list, the “fun” part, yeah?

If you see a subject that catches your eye, stay tuned. 🙂

I’ll be using the categories feature to label my posts. You can see a list of categories on the right hand menu of the blog. Clicking on a category will take you to where you can view posts on that particular subject.

Notice that a category topic will not appear until there is at least one post on that topic, so while you may not see a topic now, it may come up later.

Happy reading.

Titles and Introductions… of a sort

Why, “TheGirlandTheWolf”?

It goes back to one of my previous attempts at a single subject blog.

Inspired by my own struggles with being an introvert in an extrovert’s world, I wanted to write about human psychology, and more specifically, the duality of human nature.
I wanted to explore how none of us are what we appear on the outside, and how everyone has some sort of contrary nature to them.

Living in modern society often forces us humans to challenge, forgo, and break many of the behaviors that have been instilled in us by evolution, to survive the wild world of our ancestors.

Hence, the girl, and the wolf. The duality of human nature.

That particular blog never really went far, for… a variety of reason. But I still like the title, and the idea.

It still fits.

Some times the girl takes over, some times the wolf. They both have their place.

And here is the place for both of them roam.

Enjoy.