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I’m sure I’ll return to my regularly scheduled smile momentarily.
But today was one of those days. One of which days you ask?
One of those days when having cancer is really lonely and hard and no one understands because even friends you have who have had cancer haven’t had YOUR cancer and even if they did, it wasn’t TWO cancers.
I don’t have time to waste on wondering how I got to have this unbelievably shitty luck. Until this actual moment of wondering what you’d be wondering, the thought never crossed my mind.
Maybe only women who have been pregnant will understand this yearning for something you need to resolve an appetite, that your body and seemingly your soul seems to crave but that for the life of you, you just can’t seem to provide.
Today that thing was understanding.
That’s not to say my family and friends aren’t supportive.
My best girlfriends are trying to nudge me out of my rut, reading and responding to my updates. One of them, who had cancer before me, will be with me tomorrow.
My youngest sister is telling me how strong I am and how I’ll get through them and how God is in control.
They all have the right words and are doing the right things.
I’m just beyond comfort right now.
Inside my head I’m clawing the walls, wondering how worthwhile this life is that I’m trying to save. What is so great that I’m giving to the world? I can’t even make a living any more.
Sure I’ve done pretty good things before. But am I coasting on those accomplishments? Do I have more to do?
And if I do when will I ever get to do them?
My mother called me when I was ready to come downstairs at 3 pm, after a day of struggling with both my bone and back pain. She asked me how I was and why she hadn’t heard from me since she came back from work.
Ironically I had been laying there thinking how sad I was that she had to work, and how grateful I was that we even had that option.
That’s not completely true because I was doing several things.
I was also talking to my body, trying to get to know it better. It’s hard to describe the sensation of having a body you knew well, for all its flaws, turn into something else entirely.
Even with the steroids, I haven’t gained much weight, though I feel every pound. But looking like I was pregnant with all my lymph nodes swollen, then being bloated from fluids. Rashes in places people don’t get rashes – who has rashed inside their elbow and on their clavicle?
Aches in places you didn’t know existed. Inside my spine, deep in my legs, the folds of skin between my toes. Whose idea was this?
Twas the night before chemo.
Me having super fun at my 2nd time at chemo
There are no words in existence to convey the amount that I don’t want to go to chemo tomorrow. Then I have to get up and go again on Wednesday.
Then come three weeks of after effects and symptoms. And as soon as I feel well enough, a little like myself?
Biopsy time! And a game show called Let’s Find Out What Kind of Cancer Is In Your Chest.
What do I win?
Cancer or… wait for it? CANCER.
And surgery or chemo or radiation or everything because let’s fuck with Tinu again, she hasn’t had enough.
It’s just a bad day.
It’s just a bad day. I keep telling myself that this is not me, it’s the pain talking. Of course I can’t remember the last time I wasn’t in pain. So what does that mean?
It’s just a bad day. I want to believe that with all my heart. Believe that I’m going to wake up in the morning and my sunshine will be back. And the people I reached out to when I was in pain and didn’t reach back will be back from wherever they went.
It’s just a bad day. And I’d like to think that once I get through this day, and find something funny to watch until I get sleepy, and read one of the dozens of books in this room, and fall asleep, things will be better.
But no matter how I get out of this day, this stupid miserable day?
I have chemo tomorrow.
Someone’s going to punch a needle into the mediport in my chest and I’m going to sit there and hope my reaction to the immunotherapy drug isn’t too harsh. And read books and pretend this doesn’t suck donkey balls.
Tinu – cancer or not – we all have shitty days. But with double cancer, I’d say you are entitled to a few tantrums and smile-less moments. And sometimes people telling us we are strong when we feel anything BUT strong is worse than silence. And sometimes silence IS the best policy. Because sometimes there are no words that can soothe. And really, not everything can be or should be smoothed over and made OK. It’s NOT OK. It is what it is. And that’s why the best advice I got wasn’t one-day-at-a-time but one minute at a time. Just make it through this awful minute and get to the next one and maybe, just maybe, it will be a little better. When I was feeling mightily overwhelmed, it helped to not think about the big picture of CANCER. I just lived in those 1 minutes-at-a-time or 5 minutes-at-a-time (if I was feeling particularly brave). and pretty soon those minutes added up to days and nights and weeks and months and it was over. Behind me. Rear view mirror (although parts of it will never be over: worrying, wondering, doctor check-ups, memories). Thinking of you dear lovely Tinu. xoxo
Yes, the one minute (or for me 5 minute) at a time technique is what I was writing about in my IDGAF post. & it’s not that I’m saying that didn’t work – it’s how I got my ass up, out of bed and in to chemo.
I needed understanding yesterday. And as you said, not to hear again how strong I am. But sometimes what you need is not what people have — or know — to give.
When that happens, I vent. Here instead of in my long hand private journal so I can work things out in a way that can help others.
It took several edits for me to understand what my need was.
Help how? Caregivers and loved ones may see alternative things to say/ do that might be more comforting than attempts to fix. Cancer patients can know they aren’t alone in what they are feeling. And that venting might help them get over it in a day instead of a week.
Especially if they HAVE to in order to get better or at least past it.
Very happy your cancer is rear view, thanks for thinking of me & sharing these thoughts.
Come back, come back when Chemo was yesterday and let us know how your are. xoxo
I’m fine for now dear. Thanks for letting me know someone was out there.
Tinu- my lovely, wonderful Tinu. No words from me could be right, so instead silence. Silence with profound thought and feeling.
Silence helps sometimes. Sometimes it says more to me when someone hugs me or holds my hand and says “I don’t know what to say.” Thanks for responding. It helped me today.
I know it must be impossibly tough. Talking to your body is the right thing to do, just keep saying hello to your body and have it say OK back to you. Then have your body say hello to you and you say OK back.
Thank you Sally. You are so graceful sometimes that I forget you know something about pain struggles.
PS – my autocorrect changes your name to all caps. Still trying to figure out why I can’t change it back in my personal dictionary. So I always shout your name in my brain now!
God is in control :) You’ve made it so far and will continue to make it through all of this. Remember, your name means Love and you have a lot of it from everyone ??
If they made nieces to order I don’t think one could grow up to be better than you. You are such a blessing to me. Do. Not. Try to move farther than a short plane ride. I’ll just follow you. Love you!
Lol love you too!!!!
Words fail me…often. I just know I love you. And I hear you. Love you, love you, love you. ???
I know. I love you too. It’s the people I love, that I can depend on, who are getting me through this. Thank you for staying so real, and helping me so much.
ooops, my emoji didn’t translate <3 <3 <3
Yeah I need a plugin/setting to fix that. How can a social media tool not show emojis?