Health

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.

Toddlers Don’t Care

/ Jennifer / 6 Comments

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Last night was a rough one at my house. And for once, it really didn’t have much to do with cancer.

My son is almost two years old. And, yes, he is in the throes of the “terrible twos.”

Toddler parents–you know what I’m talking about. The screaming. The refusal to sleep. The teething. The utter nonsense.

Last night was a perfect storm. He’s cutting about three teeth right now (two of them molars), he’d napped about 20 minutes total and it was waaaay past bedtime. Yet, instead of going to sleep like everyone else in the house longed to, he had a full-on meltdown the likes of which I haven’t seen in ages. So. Much. Screaming.

In the olden days, I’d soothe him with hugs, a calm voice and most likely, the boob. Of course, those days are long gone. The hugs and calming voice did nothing. It finally took strapping him to my body in a baby carrier (thanks, LILLEbaby!) and walking him around outside in the dark, a technique I hadn’t been forced to use in many months.

These nights are hard. And like everything else, they’re especially hard when I’m tired and a little loopy from chemo. I pray tonight is better. I pray he goes down without a fight (and sometime before 10 p.m.). Because even though I’m tired and a little out of it, toddlers don’t care.

 

Missed Opportunities

/ Jennifer / 1 Comment
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Isn’t Cologne beautiful?

Today my husband and I were supposed to leave for Germany. He was accompanying me on a work trip to Cologne to cover the annual Spoga + Gafa outdoor furniture show. This would have been both our first times in Europe. Obviously, we were beyond excited about this trip.

Then cancer happened.

Instead of last-minute packing and heading to the airport, I’m on the couch, recovering from my third chemo treatment. My boss is sending me texts from Germany since she went in my place.

We also missed a concert last month, and I’ll miss another work trip to Chicago (I love that city) later this month. I know I can do all of these things next year, but still, it makes me so damn mad. Cancer is such a disruption. It robs you of the ability to do the things you want to do. And I know I’ve really got it lucky–there are so many people so much sicker than me, people who know they are going to be robbed of their life soon.

So, I feel kind of silly complaining about my first-world problems. But still, they’re my problems, and today they make me mad.

Treatment Update

/ Jennifer / 1 Comment

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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

/ Jennifer / 6 Comments
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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

/ Jennifer / 1 Comment

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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.

 

Family Ties

/ Jennifer / 2 Comments

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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.