My stage IV life

hospital

It’s been a while since I’ve posted anything. I was in the hospital for about a week and a half due to complications with the oral chemo drug I was taking.

Doing nothing except healing gave me time to reflect on this stage IV life. I thought I’d share a few of the things I face daily. Most of the below, I don’t share with anyone so many people are unaware of what goes on behind the body scenes.

Of course, not all journeys are the same, but here’s a view into mine with the hope that some of you will relate and, for those of you who are supporting someone with cancer, maybe you’ll get an eye into some of what they are going through.

  1. Pain and fatigue is a part of my daily life: The intensity of pain and fatigue shifts. Sometimes it’s worse than others. I’ve gotten good at compartmentalizing and shutting out some of the discomfort. I’ve learned to focus on other things to distract my brain. Surprisingly, it’s more difficult to do that with fatigue. There are times, like now, fresh out of the hospital, where I have to lie down for a moment after putting on an article of clothing. Needless to say, it can take me a long time to get out of the house.
  2. Sometimes the side effects from treatment will set me back as much as any disease progression will: This is why I like supplemental modalities to help quell certain side effects. But there are times my body will react adversely to treatment anyway. And like now, I am still healing and therefore am off treatment all together for at least two weeks. This means the disease may be progressing during this time. A scary prospect I try not to think about.
  3. Every time there’s a setback, I know something similar is likely to happen again at some point: Lying in the hospital, I typically have thoughts like “what if I don’t leave this time?” Eventually I get to the point where I realize this bump in the road is just part of the bumpy road I’m navigating. The goal then becomes to maximize and multiply the good days.
  4. I don’t make long term plans anymore: This is not because I think I’m going to be dead next year. But all I have is right now. Long term plans don’t give me hope of survival. In fact, thinking about going to a spa next summer just feels like an alien conversation. What does give me hope is soaking up as much of the moment as I am able. And of course, short terms plans, like I’m going to have a big meal when I get out of the hospital, always work too.
  5. There are always side effect issues: Some are worse than others, and some I’ve gotten used to ignoring, like the intermittent pain in my neck from bone mets. The funny thing is that as some of the larger effects dissipate or as I get used to them, I start to notice the smaller side effects. Right now I’m dealing with finger tip neuropathy, which is more annoying than anything. And it signals that maybe the other side effects are just not taking such a great toll at the moment.
  6. I’m not suicidal, but sometimes I think about what it will be like to drop this body: I love life. I love living. I don’t feel like I’ve said my piece yet. But there are times where this journey is so taxing that I imagine transcending this life and what it will be like to move on from all of this. I’m not there yet and I’m hopeful I will get strong, get better and self realize before I say goodbye. But I do wonder about the end an awful lot.
  7. Friends are great, but so is connecting to people going through the same thing: When I was in the hospital, I had friends visit and bring me things daily. They were all so wonderful and there is only so much they can understand what I’m going through. I’m actually happy about that. I wouldn’t want anyone I love to truly “get” this. I tend to shy away from anything Cancer. Pink, marches, walks, talks…etc. I don’t want to integrate that into my life or identify with it more than I need to. For that reason, I rarely talk to other people going through similar things. However, I’ve been on Twitter for a while and have found the digital support and understanding to be unmatched. So while I was laid up, I wound up connecting with someone who has become a close Twitter friend. We spoke on the phone at length about treatment, side effects, how we navigate loved ones and the public. And while our journeys are not exactly the same, there is a mutual caring and understanding I haven’t found anywhere else.
  8. It’s become important to me to understand every medication or treatment I’m given: My oncologist is a terrific quarterback. He’s always on top of next steps and responds to emergencies and non-emergencies at lightening speed. However, I have become of the mind that if something were to happen to me while I am “managing” my treatment, I’m ok with that. If something happens because a doctor makes a decision that doesn’t resonate with my body, I don’t think I’d forgive myself. So, when I was in the hospital, they put me on TPN (intravenous nutrition). The drip rate was fairly high and I could feel it was freaking my body out. So I requested they lower the rate, which made the infusion more manageable. I am constantly navigating things this way and have regretted none of my choices, since I’ve built a team I trust and that gives me all the information I request. Plus, everybody’s body is different and, while I may not be an expert in Cancer treatment, I’m an expert in how my body feels.
  9. The weight loss messes with my body dysmorphia: This may be something unique to my situation as I have never heard anyone else discuss this….I’ve lost a lot of weight since treatment. Currently I’m 5’5″ and 105 pounds, about 6 pounds underweight. I have lost a lot of muscle mass so that it can be difficult to open a car door or a bottle of pills. Part of me is pleased with the thinness and I’ve gotten compliments on the way I look from men to the woman at the imaging place, who always harps on how gorgeously thin I am. The last time I went in, right before my hospital stay, she said “You’re almost a supermodel now.” Definitely messes with my head a bit, since I come from a background where being thin and looks were a huge focus. I am working on shifting my priority to building strength. Because it is only with strength that I’ll be able to handle treatment or fight what I have effectively.
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Everyone gets their wings

white-flowers

I don’t generally get sentimental about death. When someone dies, I see it as their last stop on the train in whatever body they arrived in. And I don’t believe they fully disappear. In fact, I think they reenter a big pool of oneness, that births us all, only to reemerge in myriad ways I won’t even pretend to know.

But this week has been different…

I met a woman at a party a year and a half ago. She was around my age, vibrant, smart, filled with purpose. She and I not only found we had a breast cancer diagnosis in common, but we shared an oncologist.

While I go about this journey quietly, she lived it out loud. But not as a victim. As something of a sherpa to those who would come after her in this dodgy terrain called cancer. And while I find empowerment in silence, she found it in positive broadcasting and even went as far as to make a documentary about her journey. It provided answers she had been looking for and was unable to find at the beginning of her diagnosis.

So we bonded over our commonalities and became Facebook friends, as you do. I never kept in touch and rarely saw her posts. But she was in my peripheral radar. Until this week…when I saw a post announcing she had passed away.

And this time, this death has been so utterly impossible for me to process. It’s not because she was taken by the disease that I have. It’s not because of our similar age or the doctors we shared. But it’s because she was doing and living and looking mighty damn healthy up until the end. Many of her Facebook friends even said they had no idea she was sick again.

So why would that hit a nerve? Well I pride myself in looking healthy and in doing and in living every day to its fullest. And I have believed it to be something of an antidote to this disease. As if living fully will, in part, make the cancer go away. It will signal to the Universe that I’m really ok to stick around for a bit.

But if it didn’t work for her, why will it work for me?

That may sound selfish. It may sound naive – I mean, everyone is different. And as I said in the beginning, we are all headed to the same point. When that will occur, no one knows. But her death strikes a chord of terror. It makes me feel like this thing may very well take me and what if it takes me before I realize myself or do what I feel I am meant to do?

And that’s where this woman’s story is actually an inspiration. AW Gryphon touched oh so many people. She was a light in this world. You didn’t need to talk to her for more than 10 minutes to know that. She said a lot in a short amount of time. She seemed to harness the air around her and fly towards purpose and meaning and authentic messaging that helped droves of people.

So while this death is still a difficult one for me to wrap my head around, I am going to choose to focus more on the life that was realized here. Because that’s worth celebrating.

Cancer patient translator for the sh*t you say

notebook2

There are a lot of articles about what not to say to cancer patients. For the most part I’ve heard everything I’ve come across. There are good explanations as to why not to say these things, and below is my hand at telling everyone what I actually hear when certain remarks are made.

Now this post may be a bit snarky and it comes on the heels of having some empty phrases and promises thrown my way. The truth is my very close friends and family can get away with saying things other people can’t. Because they are willing to connect to what’s going on. They are willing to go to this profound and sometimes dark place with me. The problem is when people pull words that sound like they belong to that profound place but either stay on the surface or even try to travel wholly uninvited to my inner world.

For those of you who don’t have Cancer, I’m sure finding the right words is tricky and uncomfortable. It’s tricky and uncomfortable for me to be going through this. And in some ways, that’s a better place to connect than trying to fix or heal or even allay your own fears about my or your mortality. I know you mean well and, for that, I thank you.

That said, this list may not speak for every Cancer patient out there, but this is what I hear when certain phrases come my way.

1.
When you say
My Sister-in-law (or insert any other relation here) died of Cancer
What I hear: I’m better at word association games than human interaction. In fact, authentic human connection scares me a bit as does not having first hand understanding of profound situations.

2.
When you say
I’m confident you’re going to beat this.
What I hearI don’t know what to say but if I use a powerful word and sentiment, I know I’ll feel better, so you should too.

3.
When you say
We’re going to get through this
NOTE: this is really ok coming from loved ones or people who mean it and are supportive. But recently I’ve heard it from a couple of people I just met.
What I hear when uttered by someone I just metI like being a hero but chances are I will never call you again.

4.
When you say
: I know a guy who can totally cure you and will make some calls right away.
NOTE: generally uttered by the same people in the above camp who like to feel heroic in the moment.
What I hear: I really don’t have the connections I’m talking about and, if I do, I don’t have much time to work my way towards them, although talking to you now really makes me want to want to.

5.
When you say
God has a plan
What I hear: I’m super good at giving people exactly what I need in times of stress. And that’s enough for me. Plus I’m not totally sorry that this wasn’t God’s plan for me.

6.
When you say
You should stop eating meat and dairy. They cause cancer.
What I hear: I take all of my medical advice from Buzzfeed and Facebook. Oh, and I’m really good at getting facts from headlines.
or I’m a staunch believer in holistic medicine but I also believe everyone’s bodies are exactly the same.

7.
When you say
: My Sister-in-law (or insert relation here) had the exact same thing and totally beat it. I’ll find out what she did and let you know.
What I hear: I tend to jump to conclusions about things with very little information. I’m also fairly good at over-promising and under-delivering. If you hound me a lot, I may send you a few links to outdated articles that are probably not relevant.

8.
When you say
: How are you doing????
NOTE: when this is genuine from someone who cares, this is a great question. But my detector is pretty sensitive and, when said with that certain anxiety, it often really means “What’s your prognosis?”
What I hearI’m both fascinated and afraid of death. Mine and yours. So fascinated that this is the overriding emotion here. In fact, you have sort of disappeared. Now how long do you have?

9.
When you say
: Are you OK???? 
NOTE: similar to the above person. Again, when asked without that anxiety, totally fine. But I know the difference.
What I hearI’m not really going to listen to the ins and outs of your tests and progress but I’m doing my part here to support you because you obviously need it.

10.
When you say
I would never do Chemo. What I would do is…
What I hearWhite noise

 

I don’t wish cancer on you, just the perspective it brings

hearts

I am in no way at the end of my soul journey nor have I evolved out of making mistakes or needing to learn. But this sage IV cancer diagnosis has given me a certain perspective I didn’t have before.

I speak to friends who circle life stresses in a way I used to and notice that, not only do I not do that any more, but some of my biggest emotional triggers are just no longer there. Of course, I have bigger fish to fry. Or at least I’m aware of the fish in front of me.

We’re all going to die at some point, but the emotional knowing makes it harder to dwell on things I can’t control. Or better put, it makes it easier to live day by day, moment by moment, building a life I can leave feeling like I gave it my all without getting in my own way.

Of course, I still can be my own obstacle. I’m human. I have depressed bed-ridden days and what’s-the-meaning-of-all-this moments. I struggle with the why-me’s although less than you would think, and mostly around scan result time.

So that said, I decided to recount some of the things that used to weigh on me because I’m often surprised that they have little effect on my daily life anymore. And truthfully, sometimes I’m afraid they are just around the corner, waiting to reincorporate themselves into my world. Although the hope is that if they do crop up, their charge will dissipate almost immediately.

  1. Caring what people think about me – This was a big one. I really really wanted to be liked…by everyone. So much so that I would stress about conversations I’d had and wondered if certain inflections in my voice had made me less likable. These days I’m amazed that after I meet someone, I generally don’t wonder what they’re thinking in relation to me. I figure they’ll let me know by their actions or words. And I’m fine with that.
  2. Taking things personally – As part of the caring what others thought package, I would overanalyze the behavior of others and match it to how they must feel about me. In a sense, I was trying to read minds. So if someone didn’t call, my immediate thought was I had offended them or they didn’t like me. Now I just figure people come, people go. And whoever is there, is meant to be there at that particular moment in time. I also don’t have time to focus on others’ thoughts and have come to the conclusion that I’m not that good at reading minds after all.
  3. Getting (romantically) crazy about people before I know them – I used to get attached to men easily and super fast. In fact, I would do that with friends as well. And I would obsess about when they were going to call, if they were going to call. These days I get less attached to people out of the gate. Somewhere along the line I decided I don’t need to get attached unless you give me a good reason to do so. And that reason takes time to show itself. This one is particularly surprising as I date, because if a man, even one I really like, doesn’t call, I’m unphased. Not cut off, not numb, but not all that affected. Maybe it rolls into the idea of not taking things personally. Because if someone doesn’t know me, how can their lack of interest be personal? And if on some level it is personal, good to know sooner rather than later.
  4. Spending time in places or with people who don’t make me feel good – I’ve been in many situations that are the picture of fun, or with people who are the epitome of cool. And in the past, I was concerned with trying to change my inner world in that moment to make it match what was going on outside. So a “fun” party that I was not enjoying would become an exercise in morphing my emotional life, usually with little success. I’d come away from those moments feeling alien or, at worst, really bad about myself. Now, I just don’t bother. When I show up somewhere or meet someone, I listen for my inner voice to guide me. And I’ve learned there’s a difference between pushing yourself to exist outside of your comfort zone (good) and compromising your own sense of self and comfort (bad).
  5. Falling victim to my own choices –  There’s a saying that with one foot in the past and one in the future, you are just peeing on the present. I never had much of a problem futuring (which is another topic all together) but I tended to live in the past. Or lived in the present regretting the past. “If only I had committed to my writing sooner” or “if only I had kept in touch with so and so.” I’ve recently come to an acceptance of what is and that I am where I am based on all the choices I made. They were mine, good or bad and regretting any of them doesn’t improve today. While it’s important to learn from the past and my mistakes, it’s also crucial for me not to live there. Because all we really have is now.