Treatment Update

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A lot of people ask how I’m doing (which is so nice and makes me feel so loved), so I thought I’d do an update for anyone who follows this blog.

I’m just coming off my gap week after my second chemo treatment. That means today, I feel pretty dang good. I have my third treatment on Thursday. It’s the next-to-last in this round of chemo. Once I finish this portion (which is multiple drugs and the most intense part), I’ll start 12 weeks of weekly treatments with just one drug. This part is supposed to be easier.

After each treatment, it takes me about a week to feel halfway normal again. Usually, each day is better than the last. My symptoms have been fairly mild, thus far–a feeling of queasiness, but no vomiting (thanks, anti-nausea meds!), fatigue and the brain fog. And, of course, my hair has fallen out. I still have some fuzz on my head, but that’s steadily coming out, too. I’ll likely be totally bald by this time next week. But, I have a really nice wig, some hats and scarves and I’m also planning to buy some fun wigs once all the Halloween stuff comes out (my timing on all of this is pretty good, wig-wise).

Another side effect is that my immune system takes a major hit about a week after each treatment. I go in for lab work each week after chemo, and my white blood cell counts have been very low each time (this is totally normal). My doctor gives me antibiotics as a preventative measure, and I’m washing my hands so much they’re starting to get a little raw. But, better red skin than a nasty bug I can’t shake.

Mentally, I’m doing pretty well. I have my bad days/moments, for sure, but I’m hanging in there. My son is pretty oblivious to what’s going on, other than rubbing my head a lot and saying, “Mama hair gone.” But I think he thinks this is pretty cool rather than being disturbed by it. Thank goodness for small blessings.

I have an appointment next week with the plastic surgeon to talk about reconstruction after my bilateral mastectomy. All of that will likely take place after the first of the year.

I also plotted out on my calendar the remainder of my chemo schedule. I will be done just before Christmas. I really can’t think of much better timing or a more perfect gift. 🙂

 

 

 

 

 

 

Before and After

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My husband and I on our family vacation in June. That was a good day.

There are moments in life that are touchstones. These are the events that allow you to evenly divide your existence up into blocks of time before and after said event occurred. These moments change you so significantly as a person that the being you were before they happened is totally different from the individual you are after.

Until now, I’d only had two such occurrences in my life: the death of my mother and the birth of my son. I can look at photos or think of times in my life and they all fall within the parameters of whether or not my mom was still alive and whether or not I was a mother. What’s funny is that these two events–complete opposites to me, in that one devastated me beyond what I thought possible while the other brought me the greatest joy of my life–can both hold this same power over the perception of my life.

My cancer diagnosis has this same effect. I look at the photo above, just two months ago, and see a person and time that almost feels foreign to me. Look at her, with that mess of hair wrapped up in a sloppy bun, sitting in the morning sun with her husband, blissfully unaware of the shit storm looming just beyond the horizon.

I’ve thought about this a lot lately. All the significant and mundane things I did earlier this year while cancer was secretly growing inside my body. That family vacation, trips for work to Las Vegas and New Orleans, dinners with my husband, girls’ days with friends, furniture markets I walked for my job and countless nights rocking and nursing my son to sleep. I just had no clue. I was happy. I was normal. I was in the before.

We don’t know when these life-changing moments will happen. Both good and bad, it’s hard to predict exactly when these things will occur. Even with childbirth, I had a due date, but that’s not the day my child arrived. And with sudden, often bad things, we rarely have warning, either. Even with a prolonged illness, it’s nearly impossible to pinpoint the day and time a person will finally pass. You know it’s coming–just like we all have some vague sense of dread that bad things can and will happen to us in life–but you have no real idea of when.

It’s how we look at the after that shapes us, though. There are definitely photos of myself from the year after my mom died where the sadness is almost palpable. Something’s just off in my face–my eyes are a little duller than they once were. But as the years pass, that fades and while I’m still in the after, I’m also moving back into the before. Before both good and bad things. As I go through this process, I’m trying to treat every day in the after as also a day farther into the before. Because I know there is a lot of good yet to come in my life.

 

Staring Into the Eye of the Beast

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Several weeks ago, I had what I would say is one of the strangest experiences of my cancer journey, thus far.

It happened after my second needle biopsy, to test tissue in another spot near my initial tumor. That biopsy turned out to be positive for cancer, so it confirmed this second spot was another cancer.

But, that wasn’t the strange part. That came after the doctor taped me up and I wrapped my gown back around my chest. The doctor left the room and the nurse who was collecting everything used in the biopsy turned to me and said, “do you want to see the tissue sample?”

During my first biopsy, I was not given this option. And frankly, I was so terrified, I wouldn’t have wanted it anyway. But this time was different. I already knew I had cancer, and my surgeon had warned me that this was likely a satellite tumor, which was pretty common. I had little notion that this was going to come back anything but positive.

So, after a short pause, I told her, “yes.”

She showed me the tiny vial that contained some fluid and little pieces of tissue that looked sort of like bits of spaghetti noodles. This was my cancer?! It looked so, well, harmless.

I’m not sure what exactly I was expecting–I guess some black, grungy looking thing or some kind of weird, gelatinous, Ghostbusters-esque blob. Something more ominous, for sure.

Since I’ve started chemo, I’ve thought a lot about that tissue, or rather, its brethren still inside my body. Not long after my first treatment, I actually tried to feel my main tumor. I’d avoided it like the plague once I learned it was cancer, but I thought it might be worth checking to see what was going on. Instead of being a hard, very prominent lump, it was smaller and harder to find. Could it already be shrinking?!

The answer was yes, according to my wonderful oncologist. He also told me that tenderness I’ve felt is likely from the cancer cells dying and other cells coming in to do “clean up.” (I like the idea of my other cells jumping in to help tidy up this mess–thanks, guys!)

I know that because of my prognosis, this shrinking isn’t as big a deal since I’ll need a bilateral mastectomy anyway, but knowing that these drugs that make me feel like garbage are in there waging battle, and freaking winning, makes me feel so good. And if this shit has moved anywhere else in my body, I hope it’s getting the same beat-down going on in my breast. Little victories like this are what get me through the day, and even when the enemy doesn’t actually look all that scary, knowing he’s getting destroyed still feels pretty damn good.

 

Hair Today, Gone Tomorrow

And so it begins…


There are some days when I feel like a fraud. I walk into the cancer center feeling good, my cute haircut bouncing along as I walk. I feel almost as though I don’t really belong there.

Today is not one of those days.

My hair has been steadily falling out for about four days. Big clumps. I was dealing with it OK until my son, who likes to play with my hair, accidentally pulled out a big chunk. I could see the bald spots forming. I lost it.

I was going to get my stylist to buzz me this week, but I just couldn’t wait. So, I had Rodney break out the clippers and buzz me. Honestly, it was oddly freeing.

I took a shower after and felt the odd sensation of water hitting my scalp. It felt weird, but good. I don’t have to worry about the clumps coming out, and my head feels nice and cool in the August heat. 

That said, there’s no mistaking that I’m a cancer patient now. 

Me, rocking the Britney 2007/Patches O’Houlihan

Family Ties

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I’ve been thinking about family a lot lately.

A week ago I got the news that I tested positive for the BRCA2 gene mutation, also known as the “breast cancer gene.” This name is a bit deceiving, as this gene (along with the BRCA1 gene) is linked to a number of cancers, including ovarian, pancreatic and prostate. Everyone has these genes. And when they work correctly (i.e. do not have a mutation), they act as tumor suppressors, essentially keeping our own cells from going haywire and growing out of control, causing cancer.

Not realizing there was more to this “breast cancer gene” than breast cancer, I was honestly totally surprised to have tested positive for it because no one I knew of in my family had been diagnosed with breast cancer. I shouldn’t have been. Both my maternal grandmother and great-grandfather had pancreatic cancer (among other types). While I remember my grandmother finally succumbing to the effects of liver cancer, that was not where her disease initially began (especially since liver cancer is generally a secondary cancer, having spread from elsewhere in the body).

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Me, my mom and my sister in the ’80s.

My mom died 16 years ago in a car accident at the age of 53. I think she always sort of felt like she would end up getting cancer (both her parents died of it; my grandfather had melanoma and lung cancer). Since there is pretty much no history of cancer on my dad’s side of the family, it’s almost certain I inherited this mutation from her, and she from her own mother. Knowing what I know now, I’m pretty sure she would have developed cancer in some form by this point, had she lived. Sometimes I almost feel grateful that she was spared that and died instantly and painlessly.

Being that I lost my mom and both my maternal grandparents relatively early (I was 7 when my grandmother died, 12 when my grandfather died and 21 when my mom died), and I have so few relatives left on that side of the family (just an aunt, uncle and my sister), I’ve always felt like that part of my family is sort of an enigma. I have lots of questions and so few people to answer them. I wish I’d had the forethought to ask my mom things before she died, but I was so young and wrapped up in my own life that those sorts of things never really came up.

My sister is going to be tested for the gene mutation. One day, my son will, as well. I’ve notified my uncle, so if he wants to, he can get testing, too, as can my aunt. I hope and pray none of them have it. There’s a 50/50 chance that they did not inherit it (each gene has two parts, one from the mother and one from the father, so my grandmother could have passed along the good side from her mother, and my mother the good side from her father).

Knowledge is power, especially when it comes to fighting cancer. I am grateful to have this knowledge on my side. But, it has changed the way I look at my family. I feel like we’re all marked, cursed in a way, passing this dreadful disease down through the generations. My only hope is that I’m the last one.

Parellel Lives

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One of my nurses during my first chemo session was pregnant. She was one of those lucky women who stayed slim with little more than an adorably round belly to let others know she was expecting.

Judging from the size of said belly, I surmised she was likely due around the same time I had my son. Sure enough, she told me her due date was Oct. 2, the day before my son’s birthday (his due date was Sept. 30, but like his mama, he’s not exactly on the punctual side).

After making this realization, we laughed and swapped some war stories about surviving the third trimester in North Carolina during the hottest part of the year. As she and I talked, I had the odd feeling once again of being on two opposite, but sort of parallel journeys, just two years apart.

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Oh, sushi. I already miss you so.

The first time I felt this way was during chemo class (yep, that’s a thing) when the nurse gave us the rundown of all the foods we should avoid while in treatment. The list was almost the exact one my OB had given me two years prior when I was pregnant with my son–sushi, undercooked meat, unwashed fruit and veggies, etc. In both cases, the risk of infection can cause major problems, so it’s better to be safe than sorry.

There are other little things, too, like counting weeks of pregnancy vs. weeks of treatment, feeling intense cravings for fruit and vegetables and, of course, being hyper-aware of my changing breasts.

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Baby’s first beach trip

I loved being pregnant. And even though I was as swollen as the Stay-Puft Marshmallow Man by the end of it, it was one of the greatest experiences of my life. Feeling a living being grow inside you is almost indescribable, it’s that amazing. I’ll never forget the feeling of kicks turning into rolls and, my favorite, when he would get hiccups. It was all so wonderful (well, except those bladder kicks–I could have done without those).

So, to think that just two short years ago I was over the moon with excitement over becoming a mom, experiencing this miraculous process of creating another human being inside me, is kind of hard for me to wrap my mind around. Because over the past few months my body has been creating something else inside, something I neither wanted nor suspected was there. To live inside a body capable of both these things is scary and confusing. How did this happen? How did I go from one extreme to the other so quickly?

That’s the thing about both pregnancy and cancer–they both remind you that you have very little control over your own body. Sure, there are plenty of things about ourselves that we can manage, but at the end of the day, our bodies will do what they do, whether we like it or not. We can react to those changes and either go with or fight them, depending on the scenario. While I was definitely a go-with-the-flow woman in pregnancy (and I am in life, in general), this time around I’m fighting, and I’m fighting hard. Because that little baby needs me, and I plan to be here for him as long as I can.

Coming Out of the Fog

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Aside from the jaw-dropping fatigue I’ve experienced with chemo, the hardest thing for me is the phenomenon known adorably as “chemo brain.”

I’d heard about this affliction before, but until I was in the throes of it myself, I had no idea how hard it would be to deal with.

Since I never really got physically ill from my first treatment, I thought I was in the clear as far as side effects go. Obviously a little brain fog and sleepiness are far superior to puking, but it just never really occurred to me how hard those “lesser” side effects would be.

I’m an editor by trade, so my job is to read and rework copy, and also to write stories for a magazine. This is work that you need a clear head to complete. Grammar and punctuation, not to mention syntax and overall organization, are sort of hard to figure out when you’re not firing on all cylinders.

Yes, this was an opportunity to take it easy and take some time off. My very kind boss and coworkers urged me to do just that. But that’s not how I operate. I need to work. It makes me feel normal. It makes me feel useful. And it feeds my passion–I love writing and editing. It’s not just a job for me; this is something I truly enjoy doing.

So, not being able to craft a clever turn of phrase, or whip some lackluster copy into something that sings really is hard for me. Looking at a Word document and feeling utterly overwhelmed because I don’t even know how to begin to approach it makes me feel like I’m out of control. My brain function is something I can’t harness and use as I want, like I’m so used to, and that drives me absolutely batty.

Thankfully, the past two days (now 5-6 days out from treatment) have been better. I know that I probably need an extra day to veg out after my next treatment. I know to be easier on myself. But it won’t be easier to do that, because even though I know self-care is the right thing at this point, it’s the hard thing, and not being wired to operate that way is a challenge I had no idea I’d have to face.

Chemo Crash


I started chemo on Thursday. The first time is filled with questions: How will I feel? Will it hurt? Will I get sick?

Obligatory chemo selfie

For me, it just felt weird. I can’t really explain it any other way. There wasn’t pain, and thanks to anti-nausea meds, I didn’t get sick beyond feeling a little queasy.

On Friday, I felt good enough to go wig shopping and have lunch with my son, who is staying with family this weekend (good preparation on my part). I was tired enough for two little naps, but not overly wiped out.

Fast-forward to today, Saturday. Holy hell, am I pooped. I have slept almost all day. Eating is an exhausting chore. I can barely muster the energy to text back well-meaning friends checking on me. This blog post is probably the biggest thing I’ve done all day.

I really hope tomorrow is better. A restful day is nice, but this is a little much.

Boulders in the Road


This has been a week of proverbial bumps in the road of my journey. But those “bumps” felt more like giant boulders.

The first came in the form of a spot near my tumor picked up on an MRI. A biopsy this week (which was a barrel of fun in itself) confirmed everyone’s suspicion that it was indeed more cancer.

But it was smaller, and my lymph nodes and right breast still looked OK, so I rolled with it.

Then came the call from the genetic counselor: I am positive for the breast cancer gene mutation.

I did not handle this one quite as gracefully. While this answers the question of why this is happening now, it also changes things quite dramatically.

The lumpectomy is off the table. I’ll get a bilateral mastectomy with reconstruction. And I’ll also have my ovaries removed, since the gene also is linked to ovarian cancer.

My sister will need to be tested. And when he’s older, my son will, too (the gene also is linked to prostate and pancreatic cancers).

That last part just destroys me. I can handle my own shit, but knowing he might have to deal with this risk is almost too much.

I know that in many ways, I’m lucky. Knowledge truly is power, and that’s even more true when you’re fighting a shady beast like cancer. But knowing also hurts, because there’s no delusion or denial of how hard this is going to be.