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The calm

April 24, 2018

The last week has been quiet because I’ve started to feel fairly normal and have therefore resumed many (maybe too many) of my normal activities. In general, I have felt very good, had a lot of energy, and been in good spirits. The last three days, however, I have felt incredibly tired around 4pm. I think it’s probably my body telling me to dial it back a little. All the glue is off my incision so it looks better, and I’ve been able to sleep on my right side for the last couple of nights.

Last week I wrote about my visit with Dr. Z where we decided that chemo was the best option. He had mentioned another treatment that would be a possibility if I were to push him for other options, and since then, we have had several other doctors speak enthusiastically about this therapy. It’s a targeted therapy versus toxic chemo. It has its own unpleasant side effects (I’d have to be put into temporary menopause), but it isn’t the poison that chemo is.

We haven’t been able to get in touch with Dr. Z to find out if this is something I can realistically consider, which has been difficult. We were in chemo mode, counting out weeks of treatments, starting to think of who would cover certain weeks, and then all of the sudden we are thinking maybe there’s another option. It’s a good option, but the not knowing is hard.

Tuesday and Wednesday of last week, I felt really antsy and wanted to get all the info RIGHT NOW. Thankfully, by Thursday, I was able to remind myself to enjoy the calm right now, even if it is the calm before a giant, unknown storm. Now, I’m getting antsy again. If we don’t hear from him this week, we will at least know more on Monday when I have my next appointment.

In the meantime, we celebrated Alida’s 6th birthday and have been doing other normal, fun things. I got to be the mystery reader in her class on Friday (why does reading in front a bunch of 5 and 6 year olds make me so nervous??), and then after school she and I went to the Habitat ReStore. We found a dresser for her room, and since then I’ve been cleaning it up and making it look fun – but only on the inside. I painted the bottom and sides of the drawers and then decoupaged pictures from some kid magazines into the backs of the them.

I love doing this kind of thing. Honestly, most days I’d rather be working on a project like this than taking care of my kids. I guess, in all fairness to myself, dressers are less demanding, they don’t talk back, fight with their sisters, dislike the food you give them, or repeatedly come out of their rooms when it’s time for bed… and the results of your work are immediate.

I also started a class. It’s called Stasia’s Style School. Check it out and check her out. It feels kind of ridiculous to be taking something on right now, but I also think that this is a good time for me to be putting into myself. I found her several months ago on Instagram, and her language with regards to our bodies, the way we view them, the way we dress them, really resonated with me.

Stasia’s Style School is a 5-week online class and lifelong sisterhood that will teach you how to identify YOUR own personal and unique style so you can be the BRAVE BOLD BEAUTIFUL woman that you are… EVERY DAMN DAY!

Because of this, I decided it was time to get my fake boob. I want to learn how to dress my body in a way that I love and feel good about, and having to factor in the minus-one-boob thing every day was going to distract from the process. So Jonathan and I went to the store at Northside Hospital where you go to get these things. I was a little disappointed to find out that it was too soon to get the real deal. They usually want you to wait 6-8 weeks so you don’t have problems with swelling. But she said she could give me something for now.

So I got a “wellness bra” that’s basically a gentle sports bra that has pockets to put padding in. She gave me a puff (basically a little pillow shaped like a kidney bean) that has an opening where you can take the stuffing out according to your needs. So here I am, a 37 year old woman stuffing my bra. It makes me a laugh a little thinking about it. I put it on this afternoon (I was in my pajamas working on the dresser until 3pm), and it really made a big difference in how I approached my closet (I had a style assignment).

The lady at the store, Jasmine, was the epitome of the kind of woman who should be doing her job. I told Jonathan, basically everybody she meets in there is in a super vulnerable place – either women who’ve just given birth there for nursing bras and gear or post-mastectomy women who want to look like they have breasts again, and she had such a gentle, caring manner. It was a really nice experience.

One Comment leave one →
  1. Andy Zimmerman permalink
    April 24, 2018 21:54

    Hi Grace! Kim and I are keeping you in our daily prayers. I real feel where you are on this whole cancer thing.

    I had a endoscopic visual exam where the surgeon commented I’d had “an excellent response” to the chemo-radiation daily treatments, but he wants to immediately go for a radical resection of my rectum, removing 4 or 5 inches of a seven-inch rectum. That’s the “standard protocol” for my type of cancer, but it’s a major abdominal surgical procedure.

    There has been a lot of preliminary studies done all over the world in the last 10 to 15 years regarding trade-offs involved in the standard protocol. The only place I’ve seen publishing in the Oncology journals on this topic in the States is Memorial Sloan Kettering Cancer Center in NYC. My XJT insurance carrier, United Healthcare, is urging me to go there, at their total expense, to get evaluated by the principal investigator who is studying alternatives to surgery for patients who have had a “clinically complete response” to chemo-radiation treatment (CRT).

    The big question is my “excellent response” a clinically-complete response? The experts at MSKCC will help us to answer that question. I need to get my records up to them first.

    In the process, I spoke to the pathologist who did my original diagnosis last December. He said they were recently discussing my case at the “tumor review board.” He said their conclusion was I had a very small and low-grade tumor that should responds very well to CRT. Given that it has done just that, he recommends I consider alternatives to surgery. So, that’s the way we are going.

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