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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