Lasting Effects of Cancer and Treatment

I find that I'm in mood changes now. All of a sudden, I can get pretty ugly, you know. And other times, I can be just as normal. And you wonder, where did this come from? Where did this come from? Just tell your loved ones that are around you, say, “I'm into an ugly time. Go away.” You know, just go away for a little while. And then it’s, you're like Jekyll and Hyde.

Yeah, I think going through menopause, and then, like I said, being on letrozole, which is pulling even more estrogen out of me, you know just I've completely— I think my relationship to my body has had to be completely renegotiated.   My desire is completely different.
It's much more subdued. Like, the ways in which I feel in my body are completely different. It just takes more work to be in my body these days, on multiple levels. And, like I was saying in another part of the interview that, after my spine surgery, I basically went into strength training.
Like, I am at my all-time highest weight right now, which is like, as a thing in itself is not an issue, but cancer has dramatically shifted the way that my body is. I am about 70 pounds heavier
than I was when I was first diagnosed   as metastatic. I know some patients lose weight. I just happened to gain weight, you know.  And some of that might have been— just because of the intensity of the surgery, I was on steroids and other things that helped me to manage pain and all of that. And also just, who knows? So just being in a body that is   a little bit softer now, I think I felt most in myself when I was a little bit more angular and a bit more-- like I used to put on muscle really easily. Well, estrogen also helps to build muscle. So it is just, this is just a very different body than I had when I was first diagnosed. And I'm trying to love this body, but it's also a body that like, you know-- it's still one that I'm trying to really embrace, to be honest, in terms of like, I realize like my body is doing the very best that it can, or even just calling my body separate from myself. But it's like, there had to be a lot of negotiations to kind of like feel at home in my body, and that the gender piece is really complicated in terms of, like I said, I actually felt really in myself when I was a cis-identified woman.   I had a much more femme presentation for a lot of my life.  I think when I started to change shape too. And then, I mean, hormones are so powerful, like you know. And this goes for anyone who has transitioned on hormones or people who have gone through menopause, or what have you. Hormones are so powerful. And so I guess all I can say is that like, hormones have had a dramatic effect on how I feel about myself, how I feel in myself.

I’m actually trying to decide. I'm currently trying to decide whether or not this heaviness of my body that I'm feeling is the depression that I think I am starting to suffer because of these side effects and my inability to do things, or whether or not I am genuinely feeling the fatigue in my body. And I know that depression, you know, can mask that. So, I’m not quite sure which it is. It's probably a little bit of both.
 

But I'm just saying that these are things that, you know, affect you is that you just have to deal with it. You know, you have to deal with the diarrhea. You must deal with the, you know, hair thinning and hair loss and the chronic, chronic fatigue and just rearrange your life to deal with it. 

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So, I mean all these are things that are side effects, but you just change your life to deal with the side effects, you know. You just make that lemonade out of lemons, you know. You just change things around to make it effective for you, you know, to give you the quality of life that you're used to.
 

If there was a way to remove weight gain from taking tamoxifen, I'd be really happy. But anyway, I just, again it's just my personality, my life, that looking at it in a different light. Which is, I can go to, you asked me if I went to a support group. I actually went to a support group to speak one time. And it's the same group of women that come together every month. And every month, they go around and talk about what problems they're having with tamoxifen, which is great. And that's what a support group is all about. I cannot sit there month after month and listen to all the, “Ugh, this hurts, and that hurts,” and “If I could do this,” I think it's great. I just think it's a difference in personality.  And I think it's wonderful that people that get peace and, and you know that helps them, that's great, that there's that venue. But I would much rather just say, “Eh, if that's what it is, that's what it is. I can't worry about it. Now let's go take care of others.”

I lost all my hair on week two or week three of the first chemo.

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I think being without hair is surprisingly impacting of your self-esteem. I'm not a shirker or a, I can't think of the right term. But a shy person. So I went out and did whatever I was going to do, wearing all my little knit caps and things like that. But it does make you self-conscious.

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That's a, that’s a real hardship. And to find out that that was a known side effect that could be permanent, that's big to me. It would almost make you rethink the chemo. Not me. I think I would have done it anyway. But I used to have very thick, coarse hair. I don't anymore. And I've lost everything I had right here. And so it impacts how I look, how I feel about myself, how I wear my hair, how I can wear my hair.

 If there's one thing that women with breast cancer should rise up about, it's like, why hasn't the treatment changed in 30 years? Why isn't it different? Why hasn't it changed since aromatase inhibitors came out? They have terrible side effects. Why did it take a decade for those terrible side effects to see the day of light? Women went in complaining of bone pain and joint pain and whatever. And it was like, “Well, you're getting older, honey. Oh, it's arthritis.” They were dismissed. You know? And then if they weren’t- if it wasn't that, it was like, “Which would you rather be?”

Weight gain? So what?

Yeah, right? “Weight gain, brain fog, which would you rather be? Dead or have a little joint pain?” And, they were made to feel bad. It's crazy.

This happens every day. All of the side effects are never tracked. People don't know where to report them. Patients may not even report them to doctors. And so you have to take everything with a grain of salt, and I'm apparently taking a lot of salt.
 

Well, I have had changes in my body other than the obvious mastectomy.  I developed plantar fasciitis, and that has been an ongoing thing for over a year now. And the oncologists, they won't link chemo to that yet, but I have talked with other women that have experienced that too. And so that's frustrating because my body doesn't really feel like its own anymore. And I told you I like to disguise exercise because I don't really like it, but walking I did. And I can't really walk without being in pain now. I do wear orthotics. I finally went to a podiatrist. But, so, those kinds of things, I feel like I'm too young to be dealing with this kind of stuff, having to wear orthotics and stuff like that. So that has impacted my body.   I do feel like my body has aged physically because I'm just not as strong as I was before. And it's a lot harder to gain that strength than it used to be.
 

Yeah, so I think if you're walking someone through cancer journey in any way, shape, or form, you know, even if you're not the one who's prescribing the drugs, I mean, if you're the plastic surgeon, if you don't connect with the person you're working with they're not going to feel comfortable talking to you about, all the little things that really add up.  I think a lot of people go into doctor's offices and don't tell the truth about what they're dealing with because well, I already told him one, two, and three. And they seem really busy and need to get on to other things so I'm not going to bother them with four, five, and six. The four, five, and six could be pretty key pieces of the puzzle. So, feeling like you're not being hurried to go through what you're going through. Ask multiple times, is there anything else? And ask, ask those prompt questions that aren't yes or no, and because it's going to take people time to feel comfortable sharing the really awful side effects in a lot of cases that come with this. They're not parts of your body you feel comfortable talking about.

There are a number of things that we sometimes hear from patients, that we struggle with knowing whether they are a side-effect of other things that are common in cancer, whether the chemotherapy side-effect, or radiation side-effect, or just the stress and anxiety from the diagnosis itself side-effect. Because cancer diagnoses tend to be pretty stressful   you know, or whether it is something that is occasionally coming up in – in patients on these medications, but just at a low enough frequency that we didn’t pick them up in the large clinical trials. So, for instance, cognitive disfunction or aka chemo-brain   there are reports of women describing  sort of changes in the way they remember things, or their ability to find a word   because of anti-estrogen or hormone therapies   largely that seems to be reversible when women stop the medication.   But, it is hard to sort of really define to what degree it happens.