Cancer

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.

Thirty-eight

/ Jennifer / Leave a comment

My birthday was last week–the big 3-8.

I’m not a huge birthday person. I like my birthday, but I never have a party or any kind of big to-do over it. 

I guess this year I could have really blown it out, all things considered, but I kept it low-key, spending the day with my son followed by a chill girls’ night.

In addition to that, I received so many kind wishes from family and friends, which really made the day special. And those wishes seemed a little extra-sweet this year. It’s funny how a bad medical diagnosis makes you realize the significance of things. It helps you see how each birthday truly is a gift. 

So, while I didn’t have a huge party, I spent the day with people I love. And despite everything I have going on right now, that made this birthday one of the best yet.

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.

Hitting Close to Home

/ Jennifer / 4 Comments

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The Modern Love column is one of my favorite features in The New York Times. For the unfamiliar, it’s a weekly essay series that explores the topic of love in all its various forms. It’s often heartbreaking, revelatory and even sometimes funny.

Last week’s essay, though, struck me deeper than any has in the past. The writer is fighting metastatic breast cancer that recurred in her spine, the tumor actually breaking one of her vertebrae.

Not only is she fighting cancer, but she’s also my age. And she lives in my city. She’s the mom of two little boys, and she worked as a writer and editor. The parallels between our lives were striking. Except, for one–I am lucky enough to have a good prognosis (at this time, at least), while hers is far more grim.

I have cried so much for this woman I don’t even know. I’ve cried for her husband. I’ve cried for her babies. I’ve wondered if our paths have crossed at the cancer center. I’ve wondered if we have any mutual friends. I’ve wondered if there’s any way I could connect to her, to tell her I’m so sorry, to give her a hug, to ask if she needs anything.

There’s one paragraph of this beautifully-written story that I keep coming back to. In talking about her sons, the author says this:

“Their very existence is the one dark piece I cannot get right with in all this. I can let go of a lot of things: plans, friends, career goals, places in the world I want to see, maybe even the love of my life. But I cannot figure out how to let go of mothering them.”

The tears are welling in my eyes right now reading this. She absolutely captured the feelings that a mother has when facing the specter of death. I know exactly how she feels. I can handle anything else about my diagnosis and all the scary possibilities that come with it, but the possibility of not being there for my child is the one thing I cannot bear.

So, I cry again for her, and for her boys. And I hope that somehow she can feel my love and empathy floating across our city to her.

The Great Equalizer

/ Jennifer / 80 Comments

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The world is a sad, scary place right now. There’s violence and unrest, there’s divisiveness, there’s fear and ignorance, and there’s great sorrow. My heart aches to watch the news some days. The world seems to be so focused on what makes us different, and thus opposed, than what unites us as a common humanity.

At the cancer center yesterday, though, I couldn’t help looking around and seeing what makes us all the same.

I notice this almost every time I go there for an appointment. I like to think of cancer (or illness, in general) as the great equalizer. It can, and does, happen to anyone.

One glance around the lobby of the center proves this. You see everyone there: male, female, old, young, white, black, Asian, Latino, (or pretty much any other race), thin, heavy, etc. People pull up in sleek luxury SUVs and ratted-out clunkers (and everything in between). That waiting area is truly a cross-section of humanity.

And we’re all sick. Some more so than others, for sure, but at our core, all sick. We’ve all had the breath knocked out of us with getting the diagnosis. We’ve all suddenly faced the grim reality of our own mortality. We’ve all worried about how we’re going to get through this, how the drugs/surgery/radiation will ravage our bodies, how our family/friends/coworkers will handle this upheaval that affects them, too. We’ve all been so very afraid. We’ve all wondered if it’s possible to survive this.

I look at all of us and see we’re all the same. And I’ve started looking at people outside the cancer center that way, too. Sure, every person isn’t going to get cancer. But every human being on this earth is going to face their own death at some point. While, yes, that is incredibly morbid, it’s also a reminder that we’re all such fragile beings, and no matter who we are or what we look like or what we believe, we’re essentially all the same in our fragility. Our lives are so brief, so fleeting, that it is truly baffling that we spend so much of them being angry and hateful. That we waste our precious moments hurting others. That we don’t see the value of a life and realize that it’s a wonderful gift that should be treated with respect.

So, while the lobby of the cancer center is probably one of the most depressing places on the planet, it’s also one that gives me an odd sense of comfort. I feel an unspoken camaraderie with every single person in there. Because we all know. We know this ride is a short one, and it can end at any moment, so we’re going to make the best of every second.

The Last of the Worst

/ Jennifer / 8 Comments
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There’s a light down there, and I’m just a little closer to it.

Today is a big day. I just received the last of the first (and most intense) round of chemo. My oncologist told me today that life will get much better after this. He’s a pretty solid guy, so I’m inclined to believe him.

The first round of my treatment involved two drugs, Adriamycin (doxorubicin) and Cytoxan (cyclophosphamide). If you check out those links, you’ll get a better idea of how I’ve been feeling the past month-and-a-half. Fun stuff. Here’s another fun fact: When my nurse gives me the Adriamycin injection, she has to suit up in what amounts to hazmat gear because it’s dangerous if the drug gets on her clothes or skin. And that’s being injected directly into my jugular via my chemo port. Scary shit, right?

But that’s not the only reason today kind of rocks. During my visit with my doctor, he performed an exam to see if my tumors were still palpable. And guess what? They’re not! I’d actually tried just a couple days ago to feel the one that initially sent me to the doctor and couldn’t find it. There may still be cancer cells in there, but what was a hard, easily noticeable lump is now pretty much nothing! How amazing is that? Eat that, cancer!

Now, I’ll still have to get the bilateral mastectomy because of my BRCA2 status, but knowing these awful drugs have kicked the shit out of my cancer still makes me feel good. It makes me hopeful they’ve zapped anything else that may have spread elsewhere in my body, too.

While I was getting treatment today, the lady sitting in the chair next to me finished her last round of chemo and got to ring the bell. When you finish treatment at my cancer center, there’s a bell everyone gets to ring. This was the first time I ever heard anyone ring it, and man, what a sweet, sweet sound. It brought tears to my eyes, I was so happy for her, and so excited to one day ring that bell myself. That will happen around 13 weeks from now, but when it does, I might break the damn thing, I’m going to ring it so hard.

 

The Thirst is Real

/ Jennifer / 3 Comments

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So, I’ve been pretty lucky thus far in my cancer journey. I’ve felt mostly good. I’ve had some really good days, in fact.

But this past week, things did not go quite so well.

As I was coming off my last treatment, I seemed to have a harder time rebounding. I knew this would happen eventually, as they say the effects are cumulative with chemo.

Around mid-week last week, I had a bout with some digestive issues (I’ll spare you the details, but suffice it to say I spent some quality time in the bathroom). This sort of set the ball rolling for the rest of the week’s problems.

On Thursday, I had an appointment with a plastic surgeon to talk about my reconstruction options. As she went through the choices and told me about the recovery time for each, my heart sank. Intellectually I knew surgery wouldn’t be a walk in the park, but I really had no idea how hard and long that recovery was going to be. No option is a good option, in my mind. And I cannot decide what to do, regarding reconstruction. Part of me wants to say screw it and do nothing, but I don’t know that I’d be satisfied with that, either. I’m just thankful I have several months to figure this out.

During said appointment, I was standing there with the surgeon as she measured my chest. Suddenly, things started getting black and my ears had this weird ringing sensation, almost like I was under water. I knew I was about to faint, so I sat down and then had to take a few minutes to lie down, drink some water and gather myself. It was embarrassing and a little scary.

That afternoon, I had my bi-weekly appointment with the NP to check my immune levels and let her know how I was doing. I told her about the digestive issues and near-fainting, and she said I was probably dehydrated and offered to give me IV fluids. I declined. Stupid, stupid, stupid.

Fast-forward to 1 a.m. Saturday morning. I awoke with terrible pain in my kidneys coupled with sciatic nerve pain in my leg (a fun little condition I experience periodically). The kidney pain felt similar to having a UTI or bladder infection that goes untreated too long. It was really bad, and the Tylenol I was taking wouldn’t touch it. Knowing my immune levels were really low at the time from chemo, I feared an infection.

So, I called the triage nurse line that they tell us to use if we have any pain that we can’t manage (among other red flag issues). The nurse couldn’t really diagnose what was going on and told me to come into the ER within 24 hours since the cancer center is closed on weekends.

Unable to handle the pain any longer, my husband took me to the ER around 4 a.m. We were there until around 2 p.m. After blood and urine tests came back clear, along with an MRI (apparently sciatic nerve pain also can be caused by tumors on the spine, so they wanted to rule that out) that showed nothing, there wasn’t a real diagnosis of what was going on. But after IV fluids helped (along with some decent pain meds), I’m pretty sure dehydration was a big factor for the kidney pain. I likely never fully recovered from the digestive episode earlier in the week and my body just had enough.

Of course, I was wiped out from all of that, and had to miss a friend’s party I was really looking forward to that night. I also had a girls’ day planned for the next day with friends and had to beg out of that, too.

I’m feeling better now, but still not 100%. I do have a better sense of the importance of taking care of myself, though, and staying hydrated.

I’m really just hoping this will be a better week. I’m at the point where I’m starting to fatigue of this process. There are some days that I want to just run away and quit. I’m tired of feeling bad. I’m tired of being poked by needles. I’m tired of sleeping horribly. I’m tired of being afraid. I’m just tired of it all.