I’ve written before about having an Invisible yet Dynamic Disability and some of the ramifications of that experience. The struggles of having to communicate the challenges of living with MBC is real and so many don’t get how I can look fine. Only a small handful of people understand how I must prepare for an expenditure of energy and then how I pay for it on the back end.
And yet, typically no strangers walk up to me to ask questions about my illness. I can “pass” for healthy if I want to and are able to. For instance, running to the bathroom with sudden nausea or GI issues just doesn’t scream cancer patient.
Not unless one is also rocking a bald head.
When I contemplate the IV chemotherapy that I’m scheduled to start next week, this is where my mind goes. Yes, I’ll be dealing with internal or invisible side effucks that will likely make some days truly miserable. And yet the one expected side effect that creates anxiety is that I’m likely to lose my hair.
The last time I did chemo, I lost my hair. It was the summer of 2017 and it was so hot that I rarely wore anything on my head. If people stated or acted differently, I simply stared defiantly at them, silently dating them to say something. I’d just come off of 4 years of breastfeeding and pumping in public spaces and having to fight for that right, so I was primed to take care of business. Sadly, that energy that so often characterized my reactions and efforts is sorely lacking these days.
Some of you may remember how I wrote about an administrative reorganization that required blood work not to be administered chairside in the infusion room. Because of the number of times I have to be in that chair, doubling the number of sticks over my truncated lifetime was just untenable. You can read that entry here. One more insult. One more invasion of my body, my person. One more time where my quality of life was impacted for the convenience of others.
Why is it that certain things become that last straw?
I think a few things are at play here …
- CC Despite the fact that a patient is supposed to be able to make decisions about personal medical care, the actual patient experience is that if one does not go along with what a doctor wants or the status quo, there are major and often insurmountable roadblocks. I read an article recently about how patients are over-medicated while in the hospital because the only way our hospital model works is if all the patients remain docile and in bed. Trying to do something different, even if that different thing is actually better, takes an INSANE amount of energy and persistence. Too much.
- All those small annoyances that I used to deal with once a year or so when I was healthy become an often daily occurrence. For example, I handled the few “surprise bills” from the birth of my children just fine but when those same surprises arrive weekly or even more often, any tolerance I once had is just gone. Add to that the amount of times something routine is denied by my insurance company and I have no desire to open any letters that look official or aJust no.
- On any given day, I am fielding phone calls and emails from people who believe they have the right to dictate how I live my life. A simple example that just adds up exponentially are those people who make appointments for me without asking. Any control I once had over my life has been encroached upon again and again.
- Cancer is something that has affected my life but my life is not always about cancer. And yet, that’s pretty much all we talk about, especially in the middle of a progression like I’m experiencing right now. And so that’s all anyone asks me about. At some point, I have no desire to tell anyone anything.
- Sharing information and how I want to share is about my human dignity and it feels as though I have only a precious little dignity left. Thinking about how many people have seen me naked since my diagnosis is just one example. That number makes me nauseous.
And so I am adverse to (and anxious about) losing my hair because that will just be one more thing taken away from me. Another huge chunk of my privacy will become nonexistent. It will be even harder to avoid people invading my personal space.
And, in Florida, wearing anyone on my head will just be HOT.
And so I conclude with the lines of a poem by Anya Silver … “cede back to me my story/only I get to say I’m tragic.”
No Half Measures 
Sending a BIG hug. I am so sorry Abigail.
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So sorry that you have to move onto a new treatment with new side effects. I can relate to how difficult and frightening it is. I’ll be thinking of you. More than anything I hope this protocol stops the spread….
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Thank you! YES, that’s the main goal!
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Thank you for being honest and sharing with us your feelings.
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Thank YOU for reading and commenting! It really does help for me to get my thoughts down on paper or screen. 😉
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These transitions at each step are hard and exhausting. As you say there’s this flurry invading of invasions into our lives and bodies until we settle into a new normal and then..it starts again. Ugh. All to say I hear you.
Re #3 I always take that as an opening gambit. I reframe it as them “offering” me an appt & if I don’t like it, I ask for something else. Otherwise it does has that weird tang of being ordered around which I never took well..
And then the other – I’m thinking baseball caps with ponies & the little side pieces might be your best bet? I like the one I got though the headband is a bit tight and I need to stretch it out.
Best wishes for your new treatment
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Thanks for the suggestions! I’ll be experimenting. Florida is a weird place and the heat really does make a lot of head coverings just too hot.
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Oh, Abigail. So much is happening to you and while I’m grateful to you for sharing even though the mama in me wants you tuck you in bed! First, if I see anyone and talk about my cancer, nine times out of ten they tell me that I look good. If I know them, I shrug it off. If I don’t know them well I want to tell them about the time I ran to a bathroom in downtown Chicago only to have the door blocked by some old lady who told me that she wanted to hold the door open for me because I looked to be in distress (I proceeded to shit myself. No fun.) Bald Head – I have been completely bald twice and it is a true downer. Verzenio then took half my hair. I wish I could get over it, but my hair was one of my beauties and it makes me angry that it can be taken away (along with my eyelashes which were very cool, too). So I get you. And yeah! what the hell with the administrative side of all this. My lymphedema acted up, I called the therapist, and was ttold to wait two weeks and if it’s not better I have to see my doc “to rule out other problems” before I can get a referral to her. That’s insane! I sometimes think that we MBCers are afraid to lose control of anything at all, but I ceded all financial stuff to my husband because it was one stress I could dump and not feel guilty about. That has worked. You are in my prayers and constant thoughts! I hope the new line of treatment does you good.
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MBC has been a good lesson in identifying what is truly important and I’ve bene able to let go of some things that were just upsetting to me. Financial stuff, handed that over to my husband soon after we got married and that’s been a HUGE blessing. Appreciate your support!!
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Those are great lines with which to conclude your post. I admire all the spirit and even the defiance that come through your work. A turning point for my mother was when she began questioning all the medications and pushing back on these and the treatments overall. Thank you for fighting, too.
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Oh I have the defiance down. Lol. The medical people often have no idea what to do with me when I send them articles and bring up issues they’ve not encountered before. Have to be me in the middle of this.
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“I can be changed by what happens to me. But I refuse to be reduced by it.” -Maya Angelou
Surely she has met and was talking about you. Your honesty reaches my very core. Thank you.
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Such a great quote! Love Maya Angelou and her marvelous way with words. Thank you for reading and commenting!
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Thank you for sharing Abigail. I am a nurse and after having the breast cancer diagnosed, I have learnt alot about how it is to be a patient. I am so sorry I had to learn it the hard way.
But it is a bit amusing when the cancer nurse or my doctor forget my background and I start asking them tricky question. Because I am getting annoyed when I am reduced to just a diagnose when we all are so much more….
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I am also amused when they forget I’m a lawyer and they start talking about various things that I know to be false. Or when I address what real informed consent is and they aren’t complying. It’s good to remind all of the people involved with medical care that we are people. Thank you for reading and commenting!!
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Maybe don’t wear PEOPLE on your head. 🤣😉 (I figure it will make you laugh when you see it.)
Seriously, I’m so sorry. I can’t imagine. I’ve only had to deal with thinning and growing back slowly and frizzy, and that was only after drugs and products.
I have a friend at the beginning of this journey and she made a page where she posts new headgear every day. I know you’re probably too tired and over it to do that, and as you said, it’s too HOT here. (Ironically, not this week!)
You are such a beautiful person though, that I think this quote I’ve heard before applies: “Anyone who matters doesn’t judge, and those who judge don’t matter.”
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I like that quote! And yes, that’s the attitude I hope to take. There are just some days and some experiences that become the last straw. Hard to always know what those are beforehand. Love you, too, my friend.
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Point #4 struck home for me. My wife has MS, but she doesn’t want that to define her life. Only her closest friends even know about it. She works extremely hard to maintain her health, and we have been blessed with a “normal” life for the most part.
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Kudos to you both! Yes, I agree, it is not pleasant to feel defined by something that is not really “you.”
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Who in the heck is making appointments for you without your consent??? Oh my goodness. That thought alone–there’d be blood on the walls. ARGH. “Last time I checked, you weren’t my personal assistant. However, would you like the job? You can clean up…and follow-up…”
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Abigail,
This one was so powerful that I couldn’t respond the first time I read it.
Two good quotes among the above comments that I hope you find helpful.
And forgive me if I’ve mentioned this before, but a woman I worked with years ago had lost her hair to ovarian cancer treatment. She wore wigs and fashionable scarves. One day she came in with her head uncovered. She had a lovely face—as you do—and she looked simply beautiful. I told her so, and she responded: “It’s casual Friday; hair is optional.”
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I’m in the waiting zone for my treatment to change…One possibility is chemo with hair loss. The last time I did that, it was 2004. So. Its been a while. Your writing brought it into clear memory for me. Thank you for writing this down. And for the word “sideeffucks”. The past two years’ of treatment have been centered around these multiple, complex sideeffucks, all while looking “great” “good” “well” to everyone I encounter, and your words just affirmed the mix of feelings I’ve been having over the past two years. I’m grateful to read them today.
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You are quite welcome! It is a difficult mix of feelings. Thank you for reading and commenting. 🙂
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