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Learning to Live with Cancer

I know it’s been a long time since I’ve provided an update. It’s taken me this long to figure out how to say what I want to say. Buckle up though cause it’s gonna be a long, metaphor packed ride!

I was watching a horror movie a few months ago and I started to cry. I wasn’t crying because anything in the movie was moving or sad. I started crying because I realized how deeply I could relate to the characters and the terror they were enduring. The movie was called “It Follows” and the premise, in brief, is that “It” is a thing that can come in the form of any human and it constantly, slowly, follows you, all the time, everywhere, until either it catches up with you and kills you or you pass it off to someone else. I broke down in tears when I realized how closely my life felt like it resembled this horror movie.

Then a few weeks later I read this brilliant blog by a young woman who had finished her treatment for breast cancer but just couldn’t be as enthusiastic as everyone around her. She compared surviving cancer to surviving an assault. She describes receiving cheerful praise after her treatment was over like this:

As much as I appreciate the sentiment — and I really do — you would NEVER tell… an assault victim that you are so excited for them.

You know, like, girl gets held up at gunpoint, threatened, beaten down, and robbed.  She makes it out alive.  Then you tell her that YOU’RE SO EXCITED FOR HER.

Way to go, girl!  You kicked ass!

I’m so proud of you!

The difference between cancer survivors and the survivor of a random attack is that for those with cancer their assailant never really goes away. She explains:

What if that crazy gunman left the girl to live but whispered in her ear, “Watch your back, dear.  I might come back for you.  It may be tomorrow, it may be in five years, or it may be never.  You’ll just have to wait and see.  Just know that whatever you do, you can’t hide from me.  I will always know where you are.”  Creepy, no?

When I read this I almost cried again but this time out of joy for finally finding a way to so clearly explain how I had been feeling. The difference between this girl and me is that the gunman didn’t just threaten to come back but he has officially returned, has made himself comfortable in my home and has been holding a gun to my head for the last seven months.

In the beginning, right after I was diagnosed with a recurrence, when I was running around and seeing doctors all over the country, all of them were basically saying, “Well, he might seem pretty mild-mannered now but he’s definitely going to pull the trigger someday and I’m sorry but there isn’t anything we can do to stop him.” I reached out to every resource I could, took every path that opened up before me and forced some open when I had to. I was willing to try anything, spend any amount of money to get the gunman to go away. But I was also holding my breath just waiting for him to pull the trigger. I wasn’t certain I would make it to see 2016 the way doctors were talking to me. Death became incredibly real and terrifyingly plausible. Andrew and I clung to each other like never before, overwhelmed by the notion of losing one other. We hibernated for months, unable to face a world full of people who weren’t completely swept away in sadness and fear and death like we were.

Then we started to find bits of hope here and there. I slowly but surely uncovered a vast community of healers, each one more hopeful about my outcome than the next. I started on an endless stream of treatments to try to talk the gunman down. Most of them were pills I take every day at home (I’m up to more than 70 a day now), some were things I had to drink, a lot focused on what I ate or more realistically couldn’t eat. I started going to acupuncture and Reiki and a Sensei and started to see a chiropractor who also specializes in cupping and ozone therapy. I explored cannabis oil and started immunotherapies and spent an hour every night laying on a Biomat to detox my system and kill cancer cells with UV rays. I was doing any and everything I could (you can see my whole diet here and my whole treatment here if you are interested).

In the midst of this, life, somehow, became a little more normal. I started back at work but only part-time for my own sanity. Andrew got a job an hour away from the city for this upcoming fall and we started planning a move. I still spent more than a dozen hours a week getting some kind of treatments, organizing or taking my pills, trying to eat healthy, etc. but we were engaging a little more in the world of the living.

Still the gunman was there though. I had nightmares about him. He followed me all day long. Although I was feeling a little more hopeful that someday I might shake him I knew that at any moment that trigger might be pulled. It just felt so easy for a scan to come back with spots all over my lungs or liver or brain. It’s how these stories go. Almost no one would be surprised. It felt like he was constantly threatening me, “If you miss your lunch pills today, it’s all over!” or “If you eat the wrong thing I’m gonna pull this trigger.” Being a perfectionist by nature didn’t help. Now I just actually had a life or death situation I could beat myself up over for not dealing with perfectly as opposed to all the meaningless tasks I had previously made seem like life or death.

The anxiety was still pretty oppressive and after several months of hibernating a loneliness also began to take hold. I had a million people in my life who wanted me to get better (and who had generously donated a tremendous amount of their hard-earned money to the cause) and yet I was the one who had to remember to take more than 70 pills and 3 tinctures 8 different times a day. I had to constantly make sure I had enough supplies of about 25 different meds, some of which I have to turn into pills myself (or with Andrew’s generous help). I had to make all the appointments, see all the doctors, go through all the procedures, all on my own. I alone had to constantly refuse to eat or drink the wrong thing, to deny myself every food I’ve ever really loved while everyone around me had dessert. For all the love and support around me every day it was all up to me. Basically the business of saving your own life is bitterly exhausting.

At the same time I desperately needed support I also became allergic to socializing. I just didn’t know what to say to people. With my friends I never knew how to explain the tremendous burden I felt nor did I want to put any more burden on them after what so many of them have been through with me. So many people have given me so much- time, money, friendship- and I felt completely empty of anything to give back besides my own exhaustion. Going out to happy hours or social events was completely out of the question. Small talk seemed intensely insignificant. How could I pretend like everything was fine with a gun resting squarely on my temple. Bringing up cancer has a way of being a tremendous buzzkill as it turns out. Often the conversation either turns into one in which I have to accept awkward and uncomfortable reassurances or one in which I am the one doing the reassuring: “There’s a gunmen who stalks and threatens me all day everyday but it’s ok, I’ll be fine, don’t you worry.”

In the midst of this completely overwhelming time Andrew and I also suffered a series of losses that threw a blanket of grief over our anxiety for quite some time. First we lost Andrew’s grandmother, a passing that was sad, although not unexpected, and afforded us some lovely time to reflect on her life with his family. Then we very unexpectedly lost our little kitty. At just 7 years old she came down with congestive heart failure and withered away before our eyes. It was shockingly difficult to watch her in so much pain, to have to put her down and then to have to live in a home without her all of a sudden. And then, most recently, I lost my friend Huck (aka Rachel), the first young adult cancer patient I ever met. She was one of the best people I have ever met and she died at the age of 30 from colon cancer. I hated and still hate so much the fact of her death. Losing her was the most solid proof I’ve ever had that life is just really damn unfair. I really, really miss her.

So I was anxious, overwhelmed, and sad and then on top of it all I was getting sick. Sometime in about April one of my many treatments started making me nauseated. I would randomly throw up in the middle of the day several times a week and felt nauseated for about half the day every day. When you are on a regimen like mine you can’t just drop everything so you can feel better. You have to keep going and take one thing out at a time. So that’s what I did. It took three months of feeling sick every single day to finally figure it out. Despite all of the healers in my life I really had to figure it out for myself which required constant journaling and recording every single little symptom and every pill I took every day for weeks. I still don’t know for sure if it was a combination of things or one thing in particular but ironically the clearest culprit was the green tea extract I was taking.

So up until about a month ago this is where I was. I was sick, sad, overwhelmed, and anxious. I had been diagnosed with acute stress disorder which is basically pre-PTSD and I had sunk into a depression. Generally I still functioned fairly normally on the outside but I had more than one day when it felt absolutely pointless to get out of bed and try to keep fighting. More than anything else I felt extremely tired. Not physically tired so much as emotionally totally spent all the time. Makes sense for someone being stalked I guess.

Then, sometime around my birthday I decided to try to start to shake some of this off. I was slowly coming to terms with the losses. I was finally getting my stomach problems under control. And I had the realization that if I think I’m gonna live I have to keep living, and if I think I’m gonna die, well then all the more reason to get out there and start living. I had to accept that my life is filled with uncertainty. I swim deep in the unknown. Instead of fretting and beating myself up every time I screw up my treatment (which is honestly pretty much daily) I just need to live a little. It helps to feel like I might be getting a hold on this cancer a little bit. I am starting to believe the gunmen might be talked down. I originally felt like I had to get it all out now and was deeply disappointed when my surgeon determined a few months ago that it was most definitely inoperable. Now I better understand that I may have to live with it for some time or possibly for forever but it doesn’t mean I can’t make a life with cancer. I don’t have to wait for cancer to be gone to start to live.

So I hesitantly started talking about the future again. We sold our house and bought a cute Cape Cod in an adorable historic town near Washington, DC. We have big plans to paint and remodel and build furniture. I want to start a little jewelry shop on Etsy. We are gonna adopt a new kitty. I am hoping to start doing some research for a book I want to write. So far this summer I’ve gone white water kayaking and I climbed a 14,000 ft. mountain in Colorado. I’m trying to get over my social anxiety and find ways to talk to people again. It’s not like me to not be social and I need to just learn how to let myself be vulnerable and let conversations be awkward. I still spend a tremendous amount of time in treatment. I still take more than 70 pills and see multiple doctors every week. I still often feel overwhelmed. I still have nightmares. But as opposed to a burdensome weight I have finally found, and am learning how to cultivate, a lightness in my life. When I think about the future I feel mostly excited. The hint of fear is ever lingering but I know that if he starts to pull that trigger I still have lots of back up plans. There are dozens of treatments I could try if I had more money to spend, many of them incredibly cutting edge and very targeted, so there is still plenty of hope to be had. I do still want this gunman to go away, to leave me alone, and to leave all of my friends alone for that matter. But in the meantime I’m gonna live and make plans and keep moving forward into lightness, laying my burdens down along the way.

P.S. Folks have asked me about how they can continue to support us. My treatments this year were around $60,000 and we have been able to have a good chunk of those covered by your incredibly generous donations already. We are particularly grateful to all those individuals who hosted fundraisers for us. We are so honored by the communities, big and small, that have come together to support us. There may be a few more fundraisers this fall and hopefully Andrew will have some additional paintings for sale now that he’ll have more room to paint! In the meantime you can still support us in lots of big and small ways by going to our Support page. We are forever grateful.