So what happens now?

It has been awhile since I’ve given everyone any type of real update, and since that was the initial point of this blog, I figure I should probably do that. You might be thinking, she’s done the scary part of chemo, we’ll never hear from her again! But don’t you fear, there is much more to share and the journey continues, one day at a time.

In terms of my surgery recovery, it has gone quite well. I always feel pretty satisfied when the doctors examine me and say that everything looks great, as if I had anything to do with it. I still suffer from body pains, mostly in my legs, which is assumed to be a residual effect from chemo. I worry that the pain will always be there. The price paid for living? Maybe.

I’ve been going for long walks, pushing through the aches, and I feel a bit stronger each day. I’ve also gotten pretty good at knowing my limits and being very blunt when I realize I need to go home and rest. After spending so much time alone, cooped up inside all winter, it can be a bit exhausting and overwhelming to be in social situations for long periods of time. That being said, I have loved spending some quality time with my friends the past couple weeks, catching up on their lives, and talking about non-cancery things. I have such good friends. I am lucky.

Hair update: There is not much to report on that front. I look like a newborn baby. Or a balding old man. Take your pick. There definitely has been some growth, but it’s very thin and sparse, and my scalp is still very much visible. I have read that the drug infusions I still receive can slow the hair growth process. As someone who used to cry because my hair was too thick, I now find myself using fancy volumizing shampoo that promises plump looking strands. The irony is not lost on me.

So, next steps. I have been hesitant to start really thinking or talking about the next phase of cancerland, because I really just want it to be over at this point. Now that I am feeling better and feel a bit of my “old self” creeping back in, I want to just ignore all the cancer stuff, erase it from my memory, pretend it never happened. I want to move on and get my life back. But my road is a long one, and it ain’t over till the fat lady sings. (Someone better hire a fat lady to sing to me when it’s actually over.)

In a few weeks, I will begin my radiation treatment. Many months ago, when I was writing about my frustration over having to make impossible decisions, this was one of them. To radiate, or not to radiate. That was the question. And I decided, since I’m having so much fun with this cancer stuff, why not throw that into the mix as well. Just kidding. The thought process was not nearly that simple, though I wish it was. The situation is incredibly complicated and I’m not going to describe all the particulars, for fear of unleashing the anxiety I am trying to squash surrounding the subject. The bottom line is, radiation is on the horizon.

Side effects may include the following: Skin burn. Blistering. Redness. Fatigue. Cosmetic defects. Superpowers.

These folks look so happy. Radiation must be a riot!
These folks look so happy. Radiation must be a riot!

This week, I will be undergoing my simulation where they will map out my treatment zone. This will involve getting several small, permanent tattoos on my chest. Never thought breast cancer would be the reason I would get a tattoo. But there you have it.

I also will soon be starting my hormone therapy, since my cancer is fueled by certain hormones. This will be in the form of a pill, which will be quite a nice change from the way I’ve become accustomed to receiving my drugs. There are all sorts of unpleasant side effects possible from this little pill. The list is long. The most common ones are: Hot flashes. Weight gain. Hair thinning. So I will be a fat, menopausal, bald man. It’s just all so glamorous, I can hardly stand it.

So, that’s essentially where I’m at. Mentally, I am in a bit of a strange place. I am feeling happy, and hopeful, and enjoying every second of my life, with a deep appreciation for every minute that I am allowed to feel good. Every step I can take, every hour that I’m not ill in bed, feels like some sort of small miracle. Yet it is during these happy moments that I am also filled with anxiety and fear. The fear of not knowing how long it will last, or what the future holds. Or what it doesn’t hold. The fear of my lifetime of happy moments being much shorter than everyone else’s lifetime of happy moments. I feel this need to hang on to every second. To pause time. To soak up everything and everyone, for fear it will all be taken away from me.

This is what it is to have had cancer. To have danced with death. To have lived through hell. This is what I’m stuck with now. The good, and the bad. So what do I do? I go on.

Life goes on.

Playing with my nephew. Happy moments.
Playing with my nephew. Happy moments.

7 thoughts on “So what happens now?

  1. good stuf cup cake,now we move on and finish all the crap,get better and better,we are betting on you.Lv as always unc jack aunt ftan.

  2. Hi Steph, I’m sending you all positive thoughts and wishes! I hope EVERY day is filled with joyful, peaceful feelings! Everyone who knows you, and even those who don’t, are sending loving and warm wishes your way.
    You’ve touched everyone who reads this and we are all rooting for Super Steph! Love you, Helene

  3. I’m glad to hear you are getting out and walking in this beautiful spring weather! Enjoying every minute of life is what it’s all about. No one knows the future…all we can do is live in the moment. 🙂
    Those people in that ad are clearly living in the moment…and were probably told it was a Viagra ad!

  4. Stephanie – I never had to do chemo, just surgery and radiation and I can tell you that, from my experience, the radiation was not bad at all. (Compared to chemo – I’m sure it will seem like a walk in the park!) The mapping part is the most time consuming. After that it is mostly just inconvenient to have to be someplace every day at the same time. I was in an out in 20-30 minutes each day. The sunburn part really didn’t show up until the last 2 weeks of the 6 week treatment. I highly recommend a product called CoolMagic Hydrogel Sheets. They are basically a giant cool gel sheet that sticks to your breast and makes you feel more comfortable all day. When you put one on, you will say, “ahhh! that feels sooo good”. Re: the fatigue, mine was very minor and did not really become an issue until the last 2 weeks. I was able to have a totally normal routine and take care of my three kids. During weeks 5 and 6, around 7 pm I would be done for the day and need to lay down and rest. Since you are coming off of chemo you may experience it more intensely than I did, but my friends who have done both said that radiation was nothing compared to chemo. I am also on hormone therapy (Tamoxifen) and have been for five years. I have had very mild side effects. No weight gain, no hot flashes, a few night sweats in the beginning and maybe a little hair thinning (but I was 43 when I was diagnosed, so that was probably just age!). Obviously everyone is different, but I thought I would share my experience to give you hope that maybe the worst is over! Good luck and keep the updates coming!

  5. Good to get an update from you:) I know every dr is so different but I get so confused and so many questions when I hear of others treatments and how they differ from mine, like your doing radiation after your surgery! I hope you continue doing well, and though your journey isn’t over , you are that much closer 😉

    1. Thanks Becca. I know, it’s is confusing. There are many different types of breast cancer that require different ways of being treated. It’s tricky. I’ve found it’s helpful to always get a few different opinions, and do a lot of research. Often there isn’t really a “perfect” answer and no guarantees, which I’m sure you know is frustrating! Hope you’ve continued to do well with your treatments, I’m thinking of you.

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