Health

Why am I Still Crying?

/ Jennifer / 14 Comments

 

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I don’t know what’s right and what’s real anymore
I don’t know how I’m meant to feel anymore
When do you think it will all become clear
And I’ll be taken over by the fear
-Lily Allen, “The Fear”

Today I had a followup appointment with my surgeon. The meeting went well–he said everything was healing up nicely and he went over my pathology report again, reiterating what great news it contained. All in all, pretty darn good.

So, why did I spend half the drive home crying?

I should be really happy right now. Yes, I’m still in some pretty wicked pain, and my chest is a hot mess, but that will all eventually change. I’m “cancer-free;” I should be ecstatic, right? I certainly shouldn’t be boo-hooing in the car.

And yet, here I am. My emotions are all over the place. I don’t know how I’m supposed to go from being the cancer patient back to a regular person. I’m too afraid of recurrence to let my guard down. And every time I catch a glimpse of my reflection in a mirror, I’m taken aback–the mind’s eye vision of myself doesn’t fit how I actually look with my barely-there growing-in hair, pale skin and flat chest.

And even nuttier, I’m actually kind of sad that my time with my doctors is starting to wind down. I’ve grown kind of attached to these people, having seen them so much the past few months. Not to mention the fact that they literally saved my life.

I’ve heard people say that the treatment of cancer is hard, but figuring out life after treatment can be just as difficult. I always used to think that sounded kind of weird, but now I’m starting to understand what they were saying.

I don’t know how to proceed. I’m not sure how to process all of this. I don’t know how to be me anymore.

There’s a flyer in my oncologist’s office called “Finding Your New Normal.” I guess that’s what I have to do now. I won’t ever be able to go back to the old me.

 

 

What Not to Say to a Cancer Patient

/ Jennifer / 1 Comment

I’ve had a lot of time to sit around and think since my surgery. And one of the things that I ponder is all the stupid things I used to say and think about cancer.

Like most people lucky enough not to have personally dealt with the disease, I didn’t really understand how it worked. I’m still no expert, but I know a great deal more now than I once did. That knowledge makes me cringe at some of the things I used to think and say.

Outside my own transgressions, I’ve had a lot of well-meaning people say some pretty ridiculous things to me. I know it comes from a good place, and I also know that most people struggle with finding the right thing to say to someone with cancer. They want to help. But some of the things they say are pretty unhelpful. And some are downright rude and/or hurtful.

Here are some of the worst/most common things people have said to me that I would advise people to avoid when interacting with people battling cancer:

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“You know eating/drinking meat/sugar/alcohol/etc., causes cancer.”
During my first appointment following my diagnosis, I met with a nutritionist who gave me a list of food-related cancer myths. What she told me was this: Yes, eating a plant-based diet with lean protein is best for cancer patients. But, it’s best for everyone, and it has nothing to do with cancer. There is just not enough research definitively linking any food/drink to cancer. Yes, there have been studies that have mentioned certain foods could cause an increased risk, but these findings are not widespread enough to officially draw a direct causal link to cancer.

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“You know your deodorant/lotion/makeup/soap causes cancer.”
No. Just no. This is even worse than the food one. There is no solid medical evidence linking any personal grooming products such as deodorant to cancer. Most of the time, you’ll hear these claims made by people/companies peddling “natural” body products, which, to me, is disgusting. To use the fear of cancer as a marketing ploy is really beyond the pale. My deodorant did not cause my cancer. My genetics did.

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“There’s a cure for cancer, but the government/pharmaceutical companies won’t ever allow it to be discovered/used because they would lose too much money.”
I must admit, I’m guilty of saying this one in the past. And of all the wrong things people say, this one sticks in my craw the most now. The truth is, there is no one cure for cancer. There aren’t five cures for cancer. Because cancer is an incredibly complex disease. Even within one type–breast cancer, for instance–there are so many different variations that change the way it’s treated, the way it grows and whether or not the patient survives. For example, breast cancer patients can have one of two different types of gene mutation that can cause their disease (BRCA1 and BRCA2), or they might not have the mutation at all. Their cancer could be estrogen receptive, progesterone receptive or HER2 positive. Or it could be a triple negative or any combination of the three. There are so many variables that finding a “cure” that address all of them all is damn-near impossible.
On top of all that, this kind of statement spits in the face of all the intelligent, dedicated people out there in the medical industry fighting cancer every day. People like my wonderful oncologist, who not only has a professional stake in this battle with his years of medical training and experience, but also a personal stake since his own wife is a breast cancer survivor. If there was a cure, he would be the first one doling it out.

There are so many things you can say to a cancer patient. “I’m here for you.” “I hope you’re feeling good.” “I love you.” If you want to be helpful, offer to make food or do chores. But unless your friend or loved one asks, don’t offer your medical advice. Because trust me, they probably don’t want to hear it.

And if you’d like to learn more about the disease from a factual, research-based source, I highly recommend visiting the American Cancer Society website.

Recovery

/ Jennifer / 7 Comments
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Hospital fashion is seriously hot.

So, I am officially post-op.

And all things considered, I’m doing pretty well. I came home yesterday after a two-night stay in the hospital. I had a fainting spell that gave everyone a little scare in the hospital, so they decided to keep me an extra night.

The pain has been intense, but manageable. I’m mostly horizontal, but have been up and walking since the evening of surgery, and my mobility has improved each day.

The drains are gross, but not nearly as bad as I expected.

I took my first real shower today and looked at my chest for the first time since the operation. I didn’t know what to expect, and it wasn’t easy to see what I look like right now. But, as Rodney reminded me, this is temporary and I won’t always look like this.

So, all of that is great, but here’s the best news: my pathology report was all clear. The tissue from both my breasts and my lymph nodes were cancer-free. I know, way to bury the lead!

I could literally hear the smile on my surgeon’s face when he called me with the news. The chemo completely eradicated what was there, and nothing new had formed. He told me this is not only good news for the short-term, but for my long-term prognosis, as well.

As I told family and friends the news, so many of them exclaimed that I beat cancer. And I guess I did in a way, but I don’t feel like I can ever totally feel like I beat it. That may change, but the fear of recurrence is still far too real for me to be so boastful. I feel like I’m jinxing myself or something.

So, I will enjoy this victory and keep moving forward in recovery. Thanks to all who’ve sent good thoughts and prayers my way–they make a difference!

Goodbye, Girls

/ Jennifer / 19 Comments

 

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I was in 4th grade the year I got my first training bra.

I scarcely had anything to fill it, but all my friends were getting them, and when you’re on the verge of becoming a teenager (I believe it’s called  a “tween” nowadays) and your friends are doing something, you just have to do it, too.

So, one Saturday my mom took me to Sears (lingerie and lawnmowers–talk about your one-stop shop!) to pick out a training bra. I perused the rack of simple white numbers, settling on one with a dainty blue flower applique on the front.

That Monday I wore my new bra to school. No one knew I was wearing it–save my girlfriends to whom I excitedly flashed the straps on my shoulders to prove I finally had it–but I knew it was there, and it made me feel so grown-up.

Tomorrow I’m bidding adieu to my “girls,” or at least, to them in their natural state. I am nervous. I am sad. I am angry.

I’ve never been the type of gal to be all wrapped up in her ladies, so to speak. They don’t define my identity as a woman, or how I feel about my appearance. But they are a part of me. They fill out my clothes (and I am way into clothes). They nourished my child. And they also tried to kill me.

So they must go.

I started crying in the car tonight on the way home after dropping my son at his grandparents’ house, where he’ll stay this week while I recover. Through my tears, I told my husband how much this all sucks. Yes, I am very lucky in so many respects. It could all be so much worse. But, still–it fucking sucks. I cannot believe sometimes that this is my life. This is really happening. I keep thinking I’m going to wake up and this will all have just been a really terrible, vivid dream. It just can’t be real.

I’m sure it will feel very real tomorrow. People who’ve been through this surgery assure me it’s not as bad as you’d expect, and that it’s easier than chemo. I can’t imagine how that could be possible. I mean, chemo sucks pretty hard, too, but there aren’t drains (ugh), and I could still hold my son even when I felt like garbage.

But for now, I’m saying goodbye. I’ll miss the girls as they once were, but I’m hoping they’ll cause me less trouble from here on out.

Mastectomy, Simple, Complete

/ Jennifer / 10 Comments

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Yesterday I met with my surgeon to discuss my upcoming bilateral mastectomy and lymph node removal/biopsy. I now have a surgery date, and it’s very soon.

When I got home last night, a notice from my insurance company awaited me, informing me my surgery had been approved. In the section with the coding for the procedures, it said: “Mastectomy, simple, complete.”

While it will be complete, nothing about this is simple.

When I received my diagnosis back in July, I immediately feared I’d need a mastectomy. I’d run through all the scenarios in my mind by the time my doctors told me a much less invasive lumpectomy would be just as effective. Cue the relief.

Of course, that was before I found out my BRCA2-positive status. That changed everything.

Now I’m facing a bilateral (double) mastectomy, along with the removal of some of the lymph nodes in my left armpit (the side where my cancer occurred). Those nodes will be checked for cancer cells.

I’ve opted for a nipple-sparing procedure with reconstruction. This basically means that all the tissue inside (which reaches up nearly to my collar bone and around the sides of my chest) will be removed. Then, the plastic surgeon will insert expanders, which are essentially deflated implants that will be injected with fluid over a period of weeks to allow my skin to heal and prepare for the insertion of the permanent implants.

My surgeon said the recovery process will last 3-4 weeks. And several of those weeks I’ll have drains on either side of my chest to remove fluid that builds up in the space between my healing skin and the expanders. I’ll have to empty these daily. Blech.

Obviously, my mobility will be seriously affected during recovery, and I won’t be able to drive for at least two weeks after. I guess I’ll finally have a chance to catch up on all those Netflix shows I’ve been meaning to watch.

The pain, lack of mobility and even the disgusting drains (have I mentioned how gross they are to me?) aren’t what I’m most worried about, though. Per usual, my son is my biggest concern.

I won’t be able to lift much of anything during recovery, which means picking him up is a no-no. This is problematic because my son is very attached to me. I pick him up multiple times a day. And on top of that, he’s constantly in my lap, falls asleep on my chest and ends up in bed with me most nights. All of that will have to change. Like the end of breastfeeding, I know this is going to be a fairly difficult adjustment for him. He won’t understand. He will cry. And I probably will, too.

So, yes, this mastectomy will be complete. But it is far from simple.

The Ones Who Came Before Me

/ Jennifer / Leave a comment

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I’m a member of a Facebook group for women with breast cancer, and yesterday one of the women posted a gratitude thread. There were all the usual sentiments–gratitude for family, friends, the group itself, etc.–but one really struck me. I’m paraphrasing, but she said she was thankful for all the women who came before us; the ones who did the clinical trials that led to the drugs that fight our cancer, the ones who allowed doctors and researchers to discover new breakthroughs, the ones who survived and give us hope, and the ones who didn’t, reminding everyone how serious this disease is.

Her comment reminded me of the above photo, which I took last week while working the High Point Market (a big bi-annual furniture trade show here in NC, for the uninitiated).

I was taking a quick lunch break when I noticed the huge pink firetruck parked near a group of food trucks. After getting my food, I found a seat next to the truck to enjoy my meal. Sitting alone on that bench, I started reading all the messages written on the truck. There were so many–it was almost completely covered!

The more I read, the more emotional I got. There were so many in memory of someone lost–mothers, grandmothers, sisters, aunts, wives, friends. We all know that cancer can kill us. This is an undeniable fact. But, in the interest of self-preservation and not going completely mad with fear and anxiety, I try to push that fact out of my mind as much as possible.

Seeing those names reminded me the disease I’m fighting takes women just like me all the time. In the middle of Pinktober, it was both a scary and good reminder–breast cancer is not all pink ribbons and festive charity walks. It’s a real, deadly disease. It ravages bodies. It decimates finances. It breaks up families. The lucky ones–the survivors–bear the scars and carry an unseen fear (will it return?) with them forever. The others lose it all.

But those weren’t the only names I read. I also saw the survivors. The ones who wrote how many years they’d been cancer-free. The ones who left uplifting messages reminding us to keep up the fight. The survivors keep me going.

So like my fellow group member, I also would like to thank the ones who came before us. No matter the outcome, their experiences made a difference and I am thankful for those courageous women.

A Change of Plans

/ Jennifer / 2 Comments

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I haven’t updated my treatment status in a while, and that’s mostly because it’s been sort of in flux the past month.

As I mentioned a few posts back, I got really sick right after starting Taxol. This was the drug that was supposed to be “a piece of cake” compared to my first round of chemo with the Adriamycin/Cytoxin cocktail.

Of course, I’d be the special snowflake that proves that wrong.

Three weeks after that first dose, and after finally having my two-week fever and headache subside, I went in for treatment only to find out my white blood cell count was still incredibly low. This is not normal for this drug.

So, my oncologist came in to tell me that I obviously cannot tolerate Taxol (and it was the source of my fever and other problems), and they are very hesitant to continue giving it to me because if it hits my immune system this hard (counts still low three full weeks after treatment), then it could cause damage to my bone marrow.

I already had an appointment with my surgeon scheduled for the following Monday, so my oncologist ordered a rush MRI for that day so the results would be ready for my surgery appointment. So, for the second time that week, I climbed into the ol’ MRI tube, this time to scan my chest (at least they gave me headphones and let me listen to Pandora this time around–’80s pop music helps make the MRI go by a lot faster).

That Monday, my surgeon shared the results. My tumors were pretty much undetectable, and the right side was totally clear. The only thing he noticed was a tiny mass on the left side that he said looked benign. It will get removed during surgery.

That was a week ago, and now we’re just waiting for my immune system to get back on track to schedule my surgery, which could happen as soon as this month or next month. Does that kind of throw a wrench into the holidays? Yes. But, I am happy to get it over with a bit sooner, and I’m even happier to hopefully be done with chemo. (Although, if there is cancer in the pathology report from the tissue they remove during surgery, they may order more chemo.)

I asked my oncologist’s PA what discontinuing chemo (I still had 11 doses of Taxol scheduled) means for my treatment. She told me that Taxol gives me a 3% better chance of the cancer not recurring. While it sucks to lose that, saving my bone marrow is more important at this point. She also told me that the anti-estrogen meds I’ll be on for the next 5-10 years (my cancer is estrogen receptive, which basically means that estrogen feeds it) increase my chances of it not recurring by 50%, so that made me feel a little better.

So, that’s where we are right now. I’m still sort of in limbo as far as when the next steps happen, but I know they’ll come soon. In the meantime, I’m trying to mentally prepare myself for surgery and all that comes with it. Everyone tells me it’s not as bad as chemo, but I just don’t know.

Lucky

/ Jennifer / 5 Comments

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It feels kind of odd to say this considering what I’m going through right now, but I am a very lucky person.

No, I’m not generally the one who wins the big giveaway, and I’ve been in a lottery pool for years and have yet to hit it big.

I guess lucky isn’t exactly the right word. Fortunate might be more correct.

When I got my cancer diagnosis, I felt just the opposite. I felt marked. Cursed. Unlucky.

But then a strange thing happened–the outpouring of love and support began to wash over me.

In the days, weeks and months since my diagnosis, I have experienced a level of love and support I never thought possible. From the unfailing love of my husband and family to the constant cheering of close friends to the unrelenting support of my coworkers to the texts, emails, cards and Facebook messages of former coworkers, high school classmates and friends-of-friends, the level of love, kindness and concern I’ve received has truly humbled me.

At first, I didn’t really know how to handle it. I got tired of people constantly asking how I was. I even had the audacity to complain about all the attention (I know, could I have been a bigger, more ungrateful brat?). But once I got over the initial flurry, my heart just swelled with the love I’ve felt from others. It has moved me to happy tears more than once, and it continually restores my faith in humanity.

Whether it’s a container of homemade soup from a dear friend, or a comment from a complete stranger on this very blog, these gestures mean so much to me. They help me get through the rough days, and they remind me that there are so many good people in this world, and I am so very lucky to know and be touched by so many of them.

The Sick Blanket

/ Jennifer / 18 Comments
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This blanket has seen better days.

When I was a kid, we had a special blanket in our house that we referred to as the “sick blanket.” Well-worn to a buttery softness, its faded 1960s floral pattern seemed to instantly soothe any invalid wrapped within its calming embrace.

Since I was diagnosed, several people have given me blankets. And while these new blankets are cozy and lovely, when I feel really cruddy I find myself reaching for my own “sick blanket.” A gift from my mother when I went away to college, the faded blue afghan is frayed and a bit ratty, but it’s also incredibly comforting.

I’ve spent a lot of time with the “sick blanket” the past two weeks. I started Taxol on Sept. 28, and two days later I started feeling bad. I was running a fever, which made me feel totally run-down. I took some Tylenol and a nap and waited for it to pass.

Fast-forward two weeks. I’ve been fighting a fever this whole time, which came with a headache, chills and other fun symptoms. I went to the doctor several times and got poked and prodded more than once to do all sorts of tests to determine the source of the fever. After multiple rounds of clean lab work, my doctors were perplexed. They gave me an antibiotic to try, but weren’t sure it would actually do anything since they couldn’t find any sign of infection.

On Monday of this week, I called to let them know it was still going on, and my oncologist decided I should have a brain MRI. Cue the stomach drop. This is not a test you want to have ordered. I immediately lost it, my mind going to all kinds of dark places and scenarios.

Yesterday, I went in for my weekly consult and to get chemo. My lab results showed my white blood cell count was too low, so they wouldn’t give me chemo. And the PA whom I usually see told me that my oncologist now wants to do a PET scan if the MRI results come back clean. Cue more freak-out.

I straight-up asked her if they think I have more cancer, and she said my oncologist has concerns, but this doesn’t necessarily mean there’s anything going on. I also asked her if this could possibly be a result of the Taxol. She said that was a possibility and that my oncologist’s partner had a patient who basically had a fever the entire time she was on Taxol. But, she said they wanted that to be the last box they check off, after they rule out everything else.

Rationally, I know it’s good to do these tests to be sure there’s not something else happening. If there is, we need to know so we can know exactly how to proceed. But I am scared. SO scared. The thought of more cancer showing up on one of these tests sends me into a tailspin. It makes me nauseous to think about it. I hope and pray this is just my body’s reaction to the Taxol, because that’s something I can handle. More cancer is not.

I’m feeling much better today (and have been progressively for the past few days). My fever and headache are mostly gone, and while I’m still wiped out from all of this, I am actually at work today and feeling halfway normal. I’m hoping this is all a good sign.

In the meantime, I wait. I’ll probably spend more time with the “sick blanket” this weekend, too. I’m not feeling as sick, but I still need the comfort.

I Miss My Hair

/ Jennifer / 11 Comments

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Last night, I dreamed I had hair.

I was walking through a hotel lobby, wearing a cute dress and kind of bouncing with a little swagger in my step. And as I walked, I could feel my long hair bouncing along with me. I remember in the dream touching it, surprised, because I couldn’t believe it was actually there.

I miss my hair so much. I know this is a silly, vain thing. I know that in the grand scheme of things, this is such a minor inconvenience. I know that I should just be grateful that my treatments appear to be working, and the side effect of losing my hair is a small price to pay. I acknowledge all of this.

But, I still miss it.

I run my hands over the fuzz that’s left on my head, willing it to grow and multiply. My oncologist told me that it could start growing back while I’m on Taxol, and I’m trying so hard not to get overly excited at that prospect, lest it not actually happen.

I look at other people out in public, envying them and their full heads of hair. I feel like people with beautiful hair are everywhere. And I’m so jealous of them.

I gaze wistfully at my hair products and appliances, seeing them gather dust in my bathroom. I still shampoo my head, which is kind of silly since there’s so little actual hair there, but it feels better to me to at least use a little something.

I got a pretty nice wig, but to be perfectly honest, I hate wearing it. It looks so fake to me (even though it has fooled quite a few people at my job), it gets hot and itchy, and it has a weird smell. I thought wigs would be fun, but I think they’re more fun when you’re not forced to wear them. I much prefer just wearing my beat-up old ballcap that I’ve had since high school.

So, I’m just watching and waiting, hoping to see some growth.