Survivorship Sucks – Reasons to remove the phrase “At Least” from your vocabulary

Survivorship is hard. I’m about 14 months post-transplant now, and I expected things to be easier. Of course, the story of my treatment seems to be that when things can go wrong, they do, so here goes:

I am severely infertile, as expected. I am really sad about this. I love kids. I was at Whole Foods today and I saw this little blonde girl and every time I see a kid who reminds me of me as a kid I just think of how I don’t get to pass on my genetic material. Not that I’m the greatest genetic material since ever but still, it’s cool to think of kids as a mix of you and your future spouse and all that good stuff. “At least you can adopt, get an egg donor, etc. etc.” Sure, I can. I will be fine. But still, let me mourn the death of my ovaries!

In the more immediate future, I have been struggling with menopausal symptoms since transplant. If you’ve been through menopause, or your mom/wife/sister/friend has been through it, you know it sucks. I get these insane hot flashes that honestly feel more like panic attacks mixed with ants crawling all over my skin. I have been on some meds that don’t mix well with estrogen (blood issues and estrogen don’t go well together) but I recently started hormone replacement therapy and I feel way, way better. In other news, my uterus is a barren wasteland and most likely “hostile” to human life. Awesome.

My GVHD is much better. Still, I once in awhile find myself 20 minutes late to things because I was curled in the fetal position in my car begging the cramping to stop and hoping that I don’t vomit whatever is in my stupid, GVH-riddled stomach. Then, I arrive at my destination and feel a deep compulsion to explain that this isn’t my REAL face, that it’s just the prednisone making me ugly. People tell me I’m still pretty or whatever – NO, please tell me I’m ugly! I don’t want y’all thinking that I actually look like this!! “At least you can eat now and you’re on less prednisone.” Listen to how ridiculous that sounds.

I have huge bald patches on my head. People keep insisting that it’ll “fill in.” First of all, it’s been 14 months since my transplant and I am allowed to be upset that I STILL don’t have a full head of hair. Second of all, it most likely won’t fill in – it is likely chemo-induced alopecia caused by Busulfan, one of my transplant chemos. There are a lot of studies on Busulfan-induced alopecia and it is almost always permanent. “At least you have some hair.” Seriously? Would you be fine with huge bald patches all over your head? If you would be, you’re welcome to join me – I’ll even shave it for you. I was actually chill with being bald. It was okay. Sometimes when I was in public and people were staring at me, I liked to think they were trying to decide if I was edgy or sick. Obviously I was both. But now, the last thing I want is people thinking this was a style choice.

Surviving cancer is like getting older. Not the wise part where you have high earning potential, but the unfortunate part where nothing works right and you’re cranky about it. Sure, it’s better than the alternative, but that doesn’t mean I have to be excited about it.

Being a professional patient is a weird thing. You find yourself saying things like “my kidneys hurt” instead of expressing generalized back pain. You’re late for things and you’re like “oh it’s just this disease I have..” You start calling your procedures “minor” because even though you are under general anesthesia, you aren’t getting any major muscles cut open and you fully anticipate finishing your math homework later in the day. That’s life.

I recently got the green light to carefully return to school in January. This summer, I took a class at Stanford called “Sociology of Health and Illness.” One of the topics we studied was this idea of the “sick role.” For people in the sick role, your primary job is to get better. This idea was developed before medicine was where it is today, before you could successfully live alongside a chronic illness. I find myself leaving the sick role, trying to understand how this illness will impact me in my day-to-day life. I will be living in graduate housing in order to accommodate my immune and dietary issues (holla at my #mungermansion). I am nervous – my body is unpredictable yet I still I expect a lot of myself. I’m cautiously optimistic. I have not been inpatient in over 2 months now, and I get stronger every day. It’s easier in some ways, but it’s harder in others. In summation – you’d be pretty pissed if you used to be a normal human and now you have a chronic stomach issue, large bald patches on your head, infertility, muscles so weak you can’t take 2 stairs at a time, and just lost a year and a half of freedom. “At least” is not a good phrase for this situation. Recovery is a long process – please remember that just because the hair is (kinda) growing back and my muscles are returning doesn’t mean that this is over for me.




4 thoughts on “Survivorship Sucks – Reasons to remove the phrase “At Least” from your vocabulary

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  1. Hi, Brooke,
    I was led to your Blog by our son, Jeff Loose. Jeff passed away in September 2015 of pancreatic cancer — a nasty SOB. I feel like Jeff would want me to contact you with comfort, concern and our heartfelt caring for you during this nightmare you are going through. Know that we are empathetic with your struggles. We hope someday you will look back on this. Perhaps the blog from Kurt Brindley who has written books about his journey will help you. His ordeal sounds like yours. You will be in our prayers.
    Don and Mary Kay Loose


    1. I followed Jeff closely during his illness – I actually spent a good chunk of my childhood over at his house. Cambria and I went to school together pretty much straight through from kindergarten to 9th grade. I genuinely, deeply appreciate the support. I will take a look at the blog you suggested. I’m sending you my best.


  2. Brooke! I LOVE YOU GIRL! Seriously you and I share a similar story and I love how well you deal with things. It is EXTREMELY annoying when people use ‘at least …’ as a way to dampen down the situation (eye roll)
    Have you ever thought about making a yt channel cause I would subscribe instantly lol
    I am so glad and relieved that the hormone therapy helped you with the pre menopause ovarian failure thing because I’m about to be in the same boat. I am trying to keep a positive attitude on the whole children and future thing. I pray to God like everyday about it as well 😁😭
    I am 20 now and I know that with time and treatment compliance and positive atutidue and prayer things will get better for BOTH OF US! I am gonna be 2 years post transplant in November this year! When the gvhd symptoms began I really thought they were never gonna end, but here I am. Alive, mouth ulcers reduced to nothing (which I am most happy with) liver results improving, ECP working to improve my skin and hyperpigmentation slowly. Sometimes it’s very embarrassing and has a deep effect on my self image and confidence but then I remember that I don’t need to feel that way! We’ve been through a real real real siTuaton and for us to come out of it alive and well, it’s a miracle! So when people look at the hyperpigmentation and skin I just ignore it because I know it sounds shallow but they can’t go through what we’ve been through and make it out with a positive happy life. I love your blog so so much and am so happy for how far you’ve come
    Sending love from London, UK xoxo

    Liked by 1 person

    1. Hi! I have thought about YT but tbh it seems like way too much work. I am also intermittently on high dose prednisone which makes me soo not want to be photographed/filmed. I love that you included time and treatment compliance with positive attitude!! It really is all of those things and the first two are so often overlooked. I know what you mean about appearance. My hyper-pigmentation isn’t too bad except on my legs, but the prednisone moon face and permanent alopecia really get to me. I saw you followed me on insta, I followed back ❤

      Liked by 1 person

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