fraying at the edges

Natural menopause is a fender bender, whereas medical or surgical menopause is like hitting a brick wall at sixty miles an hour.

After talking with some other folks on this carnival ride, I’m not sure of the veracity of the first part of that statement – but the second part I’ve got to agree with. It took a few months for my body to figure out that something wasn’t *quite* right, but it’s definitely making up for lost time now.

A quick tour of the lovely land of Chemopause and some of its less attractive attractions:

Hot flashes –  8 -12 times per day, throughout the day, every day, ranging in duration and intensity from quite mild to shining with sweat and strip-down-as-far-as-is-decent-RIGHT-frackin’ NOW!.

Night sweats  3-5 per night, every night, of the type severe enough to wake me. As far as I can tell, these are just hot flashes during sleep and don’t really deserve their own name- but because I am sleeping, I can’t do anything about them until I wake up and throw the covers off – by which point I and the sheets are well sweated. Perfectly charming, to be sure.

Cold flashes – these are wildly inconsistent, varying from none to several times per day. Just like hot flashes, only completely different – closer to flu chills than actual cold, that same immediacy and inability to get warm, no matter how many layers I pile on.

I’m often chilled after a hot flash or night sweat – to be expected, between the rush of blood to the surface and being covered in sweat – but cold flashes are something different and much much nastier. They start in the bone, that deep inconsolable chill, my muscles tighten to the point where I shiver and I can not get warm. These are absolutely wretched, without a doubt, among my least favorite things…. they do pass, though, and that’s something.

Depression/Anxiety – Yes and yes. These are both being aggravated by the constant and continuing sleep deprivation (hard to get a good night’s sleep when you’re waking covered in sweat three to five times a night – and I’m often having trouble falling asleep again after I wake up). I’m constantly tired; I’m constantly unable to get a good night’s sleep. For a time I was having wildly elaborate (if completely disjointed) dreams; for the most part, these have ended – I think I’m simply too tired.

I’m having trouble staying on task, or completing normally simple tasks; this, in turn, adds to my overall levels of depression and anxiety – and I tend to avoid thinking about it by consuming large amounts of passive entertainment, which doesn’t help – but there’s a base level that’s simply biochemical fuckery, overlaid with all the rest of it.

Alas and alack, *recognizing* the reality doesn’t solve it.

Drying – This is the section that might be TMI for many of you, and please do feel free to skip it – basically, my skin and all my mucous membranes are becoming much drier and are easily irritated, from my nose to my toes and all the parts betwixt and between. An endless parade of lotions and eyedrops and chapstick and so on… really a pretty minor reality, simple low level irritation, aside from the specific bits I’d prefer not to discuss in public. There the effects are quickly becoming a pretty major deal and a source of great discomfort, both physical and emotional. I’ve got a scrip for the estring (a low dose, slow dose, estradiol ring) from my primary doctor, and am checking with my oncologist as to the relative safety of using it. As far as quality of life goes, I may go ahead anyway, assuming I can tolerate it, whatever the answer.

Beyond the carnival rides in the desert  the simple reality is I wasn’t prepared for this. Chemopause wasn’t discussed with me before I started chemotherapy, and it wasn’t until I was well into radiation – possibly even through it-  that I realized that this *was* my new life. To say I’m not best pleased about that would be a huge understatement.

It’s certain that chemotherapy lowered my risk of recurrence, but I went into it semi-blind. Despite loads of research, I didn’t know the full cost in terms of quality of life – I thought I’d go through the three months plus of hell, I’d recover slowly; my hair would grow back, maybe different, but I’d have hair; there might be some nerve damage and cognitive impairment but it would be unlikely to be major;  and it would be over and done. It’s not exactly how it’s panned out.

I do realize I would have gone through menopause at some point anyway, and by going through chemotherapy and all its effects I may have extended my life – but I am going to go through death at some point as well, and the quality of my life up to that point is  important to me. I also believe that natural menopause is less likely to have the severe effects of medically induced menopause, being that the body has a greater time to adjust to the reduced levels of hormones, and the reduction tends to be more gradual. In large part, wanting to avoid medical menopause was why I wanted to avoid Tamoxifen – as my oncologist knew.

I might have made the same decisions going in had I known, I might not have – but I didn’t get that choice. My oncologist knew chemopause was a likely and permanent effect of chemotherapy; I didn’t. She also knew I wanted to avoid medically induced menopause – and I tend to believe that she choose what she felt gave me the greatest chance of cancer free survival, and I think she did it with the best of intentions. That she meant well and acted to give me the best chances of survival is not in question.

To me, it’s still a betrayal.

My body, my life, my choice.

There’s no going back now, of course – there’s nothing to do but go forward, patching together whatever makeshift solutions I can and waiting for my body to settle into the new reality. Some of the effects should lessen in time (sooner would be better, btw), some changes will be permanent, and there are other consequences that may show up later (such as bone and muscle loss).

Next time, I’m going to make her give me beads.*

http://xkcd.com/996/

*In reality, I’m working on a letter to her, and will most likely be switching oncologists as soon as I can muster enough energy and determination.

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7 Responses to fraying at the edges

  1. carinamdiaz says:

    I will start my chemo in February. May I ask exactly what drugs did they use in your chemo?

  2. dropjohn says:

    I had the Taxotere and Cytoxin regime, with Neulasta boost the day after (for white blood production). If that’s what you’re doing, and you have any questions about my experience, I’ll be happy to answer – as always, your milage may vary.

    However, there are some things that are pretty likely with that regime: menopause (permanent or not partially dependent on age) and hair loss are two of them.

  3. carinamdiaz says:

    Exactly what I’m getting but I will have the neupogen shots, not the Neulasta. I volunteer to give the shots to myself to reduce my visits but it will cost me $2,000 per shot if I administer it to myself instead of $50. Ridiculous. I will be reading your past posts. Thank you. I will have more questions, probably.
    I will shop for a good wig. I can’t go out bald.

  4. dropjohn says:

    Whatever makes you happy and works for you – I didn’t have troubles being bald, and it was comfier for me than wearing a wig. I started chemo in June, so you’ll want to look at archives from then. I had a more severe reaction than many do – there was no way I could have worked through it – but many do. As always, your mileage may vary.

  5. Lordy, I feel like I am talking to myself reading most of your post. The hot flashes, cold flashes, night sweats. And lack of sleep.

  6. PS thanks for the reply on my blog re: BRCA

  7. Pingback: breast cancer mardi gras….there’s a cartoon!!! | ihavebreastcancerblog

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