So I’ve been exhausted all this week, like, lay in bed all day tired. So I finally texted #bestdocever and said “Seriously I’m so fucking tired.” (Yep, we text, and we swear. Reason #583 why he’s #bestdocever.) Turns out my hematocrit is 25.9 today, which explains the fatigue, and I’m having a transfusion tomorrow.
When I’m this fatigued, my feelings tend to wash over me in ways they don’t when I’m feeling well. A friend told me today that leaning into it when it washes over you is a good idea, and that’s really good advice, so here I am, writing this post, hoping that processing will make me feel better. Here is what I’m feeling right now.
I hate that I can’t do stuff for my family, like a simple chore like doing the dishes, because I’m too tired. I hate that when I do try to do a simple chore, I feel winded like I’ve just run a marathon. I hate that I smell terrible because once again I was too tired to take a shower–and I hate that after a shower, I need to lay back down because I’m exhausted from the effort of taking a simple shower.
And even more so than any of that, I hate how I feel emotionally when I’m so tired. I find myself hating the life I’m living. Last week I had my regularly scheduled brain MRI, and I wasn’t even that nervous about the results, because I knew my tumor markers were still dropping and I knew it would probably be fine (and it was)–but I hated having to go have another scan, another IV, another day when I was tired and yet had to drag myself out of bed, out of the house, to lay in machine for another half an hour.
It washes over me how this is my life, this is going to be my life for the rest of my life, there will never be a time when I’m not getting scanned and poked at least every 3 months. This will go on for the rest of my life. I will always be living this half life, desperately trying to stay alive, not able to participate fully in the world, knowing all of this, all the treatment, will be futile someday.
I know I’ll feel better after the transfusion I’m having tomorrow, and that it’s really hard to live with the ongoing trauma of living with metastastic cancer, and it’s even harder when I’m physically down. I’m not into woo woo stuff about mind-body connections, but the reality is that when I’m physically weak, I have a lot more trouble being emotionally strong. Which is why it’s really just a rough time when I’m this fatigued.
I found myself apologizing to some friends for being pretty absent lately, and one of them said, “Don’t ever apologize to us again.” And when I heard that, I burst into tears, in a good way this time. I need to remind myself that my friends don’t expect me to be Superwoman. They know this shit is HARD and they’re OK with me not being that cancer patient who’s standing on top of a mountain being like “I refuse to let this slow me down.” That it’s perfect OK with them, and they’re not disappointed at all, when I can’t be that person. It’s a relief to know I’m not letting them down.
The Hubs says the same thing, too, when I tell him how useless I feel. He points out that I DO contribute to the family even when I’m feeling so down, and that I’m not letting him down. That he knows I’m not perfect, and he loves me anyway. All this support is so powerful, and it keeps me going when I’m at a nadir.
That’s it, I’m done now. Processing over, letting go of my guilt, and resting and hoping tomorrow brings better things. Like blood and energy and a return to my sunny disposition.
I am laying around all day today because I am too tired to do anything because I spent yesterday on planes and in airports. I too hate that I have so many unproductive days, but I guess I should at least be happy that I am still here right now being unhappy about my lack of productivity. <3 Hope your transfusion went well. I can tell my low RBC days because I get winded going up 6 stairs. You shouldn't apologize, you do what you can when you can.
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Just now seeing this, Dear Beth. I’ve known you for a long time and the reason you feel so phlegmatic is that prior to your diagnosis/slash/burn/poisonings is, you were ‘superwoman.’ You were a force of nature–someone like I’ve never known. Hopefully, your transfusion has restored some of your traits Even ‘half empty’ you get more done than any healthy person. Love You Friend!
Hi Beth,
You are loved just for being you. Those in your life who love you, don’t need you to “do” anything. They just love you. Period. Still doesn’t make you feel any less tired though, right? Hope the transfusion helped tremendously and that you’re feeling better. xo
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I get it. When I was going through chemo I used to wish I could vacuum, and I LOATHE vacuuming. Hope today was a better day. xo
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I hope your transfusion was a success!
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I hope your transfusion gives you some umph! This month was the first in 6 months that I didn’t need a transfusion. its ok to rest and regroup. Light, peace, good scans, and good CBC results are wished for you.
I just had my first ever transfusion. So I know of what you speak. Hold on as best you can. My jewellery making and other crafts have always been my saviours. Not when I’m too tired to do them! So tired all you can do is think… Try to distract yourself…a movie or five?
Take care,
Gail
I hear you.
Being chronic and terminally ill on a daily basis is truly suck city. May the transfusion give you a big boost to being a part of another day.
It’s so understandable that your body has intense fatigue especially since you need a transfusion. Letting go of guilt and being emotionally stronger when your body is weak, is easier said than done. I hope the transfusion reinvigorates you. Be kind to yourself. You do so much for so many people. Love, light and prayers to you.
I received the best scan “news” last week for the first time in a year. Everyone was so happy but I wasn’t. I feel exactly as you do–“I’m a burden to everyone” ” this isn’t going to end well” etc. The reality of our daily lives sucks and we really do need a lot of support to mentally keep going. Hope the blood gives you the boost you need!!!!
Beth, you don’t need to contribute or do anything to be loved. Your family and friends love you just for who you are. It’s horrible and sucks for you, but you are always loved, even by us who only know you online. xoxo
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Hugs, Beth. I hear you loud and clear. I’m so sorry. ❤️
I relate so much to this. *So much.* Thanks for sharing it.
They absolutely go hand in hand Beth. It’s almost impossible to feel “up” when your body is letting you down so tangibly. It sucks. I hate that you and so many people are having to live with this, like this.
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