Drowning but Still Breathing

Think of yourself in a swimming pool or a lake, the water warm against your skin and the sun is shining brightly on you. Life is good. You're enjoying a swim, and so you decide to dive. Somewhere along the way, you lose your orientation. You're deeper than you thought you were and you didn't take a deep enough breath to comfortably swim to the open surface of the water. You finally get oriented, and you feel your pulse rapidly quicken, panic is starting to set in. You swim forcefully to what you hope is the right direction. At some point, your lungs begin to burn, to throb with intensity in rhythm with your heartbeat and the longer you stay under water, the harder the throb becomes and the faster your heart beats. You see the light, you realize your almost there, but before you break through the top of the water, your lungs now feel like they are on fire. Your mouth is fighting not to open automatically and take in a huge gulp of water instead of air. You're straining, moaning against the involuntary movements your body is trying to make to force you to breathe, not realizing you’re underwater though your brain is fully aware and that’s why you’re panicking.

And then, at last, you break through the surface with a huge splash and the first thing you do is actually not breathe in… believe it or not, you exhaled rapidly, like you’re trying to clear every last bit of air out of your body so that when you take that next breath, the next big breath that will calm the panic, ease the pain you’re now feeling in your chest, stop the throbbing that has begun in your head and bring your vision back to you… so that you will get every breath, every ounce of oxygen, that your body needs. That’s when you gasp, and then you start breathing rapidly, hyperventilating yourself, gulping in air like a starving person who hasn’t eaten in months, drinking in the water like a dehydrated man wandering in the dessert might drink from an oasis.

Your arms flail. Your breath comes rapidly but in full, big gulps, you pant, you moan, you gasp. Slowly, the burning subsides. Slowly, painfully slowly, the pain subsides. The throbbing slows, and within a few minutes, you’re back to normal for you, only absolutely, completely exhausted, worn out, tired from the fighting just to do something that for nearly everyone comes so easily:

Breathing.

Most people have probably experienced this at one time or another, to varying degrees, if you’ve ever swam in any body of water of any size. I know I have, especially when I was a kid.

But these days, that's how I feel living with lung cancer and IPF, every time I get up to go to the bathroom and walk back to my bed. This is, to a lesser degree, how I feel when I just roll over in bed. Walking out to the car to go to a doctor’s appointment takes so much energy, it takes about 4 minutes just to get my breath back, and then it zaps so much energy from me, all I want to do is lie down and sleep. It’s like being a fish, flopping around in the bucket, sucking gills in and gasping over and over again for breath. It’s panic inducing.

When I get up and move around, I monitor my stats (meaning saturation of oxygen in my blood–stats), because, when the panic hits me when my stats drop, I can watch the numbers on the pulse ox monitor. When my breath first starts to fail, when the pain first starts to build, I can watch the stats go down while the heart rate goes up. Then, once I’m sitting still again, I can watch my stats go back up and my pulse go back down.

I’ve learned from doing this that anything below 93% makes me drowsy and makes my eyes water (don’t know why). Anything below 90% makes me tired and I start to feel achy and a little breathless, like I can’t get enough air in when I breathe (think about how you feel when you’re stuff after a huge meal and you’re tired and can’t take in a deep breath–feels sort of like that). When it gets to 87%, my chest starts to burn. Anything below 85% starts to hurt, 81-82% is pretty common for a quick trip about 20 feet away just to go to the bathroom. Coming back is usually worse than going there, because I’m still recovering from having walked the first way there. Anything in the 70%s is cause for major panic in me–it not only is panic inducing, it freaking hurts. My chest feels like it’s on fire. The veins in my neck will distend and throb. I get super hot and sweaty very quickly, my vision will grey out and I will be gasping for breath.

My heart rate coincides with the breathing. The faster my heart is beating, the lower my sats are, or vice versa. Anything over 120-125 on my heart rate and my stats are likely not good at all. I take a medication that helps control my heart rate now, so that my heart doesn’t freak out and overcompensate for the hypertension that exists inside the pulmonary artery. Before this medication, a heart rate around 200 upon exertion was not uncommon. Now, I only very rarely get up to 145 or so, and that’s on bad days. This has helped me considerably with the panic and pain. Usually, as my stats go back up, my heart rate comes back down. Once my heart rate drops below 100, I know my stats will soon be over 90 again. Once my heart rate is back in the 70s, I’m almost normal again on my stats.

But the pain in my chest is always there. constant, dull, achy, behind everything else I feel, always reminding me that I am not normal, won’t ever be, and that I’m limited. My activities are limited.

And I’m lucky right now. When I sit still and don’t move, don’t exert myself, my heart rate is actually low and my stats (while on oxygen) are normal or near normal. As long as I don’t move, eat too much, laugh too hard or fall asleep, my stats will stay mostly normal. When I’m not moving around, I wear an oxygen cannula, with an oxygen flow rate of 2 liters per minute. When I’m up moving around the house, for short bursts, I wear it at 3 liters per minute. And when I have to walk anything more than to the bathroom and back, I wear it at 4 liters per minute, until my stats come back down. At night, when I’m sleeping, I wear it at 3 liters per minute.

I never get to take it off. I wear it when I cook, clean, kiss my loved ones (yes, sometimes it falls off and they literally take my breath away!), when I eat, when I take a shower, whenever, whatever I do, I’m wearing my oxygen cannula. Like some people wear glasses or hearing aids, I wear my oxygen cannula. I don’t mind it too much, and considering how much better it makes me feel, it’s worth it. If I’m just sitting around, I don’t really even notice I have it on any more (of course, I do have a perforated septum–I could so rock a nose ring right now if I wanted to! [ don’t worry, I don’t want to!]

In the meantime, it sure can wear a girl out. I love to swim, but nearly drowning multiple times per day, without any water, isn’t all that much fun.

And I know that if I’m sick-er than I already think I am, I need to do something about it. I suppose I’m only delaying the inevitable. And if it were just a delay, that would be okay. But it’s not just a delay. It’s a potential worsening of the existing condition–if there is one–and I know that. I know that.

So, that is why tomorrow we start the process of getting me off hospice. Sigh. Back to seeing the millions (not really millions, but it feels that way) of doctors I see on a regular basis. I need to fight back. My body cannot handle just sitting here doing nothing. So I need to just suck it up, buttercup. I need to just go in and get it done. And you know, the thing is, if it’s nothing, then I’ve spent all this time worrying about it unnecessarily. So there you go. That’s what I need to keep telling myself. It’s going to be nothing. But, we already know, its something. 35 METS to be exact and it's in my spine which means it's in my bones.

Now…. I just have to actually get myself up and do it. Anyone know how to make that happen?

Oh, and September is Pulmonary Fibrosis Awareness month. Going blue for pulmonary fibrosis awareness month. For $10, I will dye both of my kids hair blue, for $20, I will dye two of my friends hair blue plus my kids.
For $15.00,you can order blue icing topped cupcakes (a dozen) and I'll dye my kids hair blue.
You will receive a bracelet, notepad, and a pulmonary fibrosis pen just for donating.
Let's go blue for pulmonary fibrosis month and raise money for more research so that one day, there may be a cure! Just click on the link to make your donation http://www.firstgiving.com/fundraiser/shanna-brock/GPFAM2016.

Love you all and truly mean it and God loves you too,

Shanna xoxo

Here is the link to our Go Fund Me Page to help with medical and travel expenses: gofund.me/hope4shanna2016

Official blog Facebook page: https://www.facebook.com/shannabananahealthandfitness 

 

Official prayer warrior page for my fight against lung cancer: facebook.com/hope4shanna