BRCA2

On Pause

/ Jennifer / 3 Comments

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So, since my preventative oophorectomy back in May, I’ve been in full-on menopause. This is a super-fun condition to be in during August in the South.

I’ve actually been in a menopausal state for more than a year now, since chemo sent me into a chemically-induced menopause last year. But with that, I didn’t really get the full symptoms that I’m experiencing now–hot flashes, night sweats, mood swings, weight gain.

Physical symptoms aside, being menopausal at 38 is a peculiar thing. While the rest of my peer group is still far from this stage of life (some are even still having children), I’m swapping complaints and cooling strategies with women 15 years my senior.

It’s sort of like having breast cancer (or cancer in general) at a young age. It feels very lonely because most of your friends have no idea what it’s like or what you’re going through. And if they can relate, it’s likely because one of their parents has dealt with the disease.

Looking around the cancer center, I’m usually one of the youngest people in the waiting room. And a lot of the older patients look at me either with bewilderment or pity. I often see eyes quickly dart from my face to my wrist–seeing my patient bracelet confirming, yes, I have cancer, too.

I think this is one of the hardest things that no one talks about when it comes to being a young survivor–the sense of loneliness and feeling sort of out of place in your own life. As much as my friends and loved ones are here for me, they really don’t know how this all feels, physically or emotionally. I’m still me, but I’m very different now and my view of the world has changed dramatically.

I think that’s why so many of us manage to find each other online, and why groups like the Young Survival Coalition are so important. Sometimes it’s just nice to commiserate with someone who completely understands. I have found some of that in this last year, but I’m still looking for my “tribe,” as the kids say these days.

In the meantime, I’ll be over here sweating it out, anxiously awaiting fall.

The Sweetest Word

/ Jennifer / 2 Comments

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I got a card in the mail from my OB/GYN office this week. Just a simple card with a couple of check marks and one beautiful, glorious word: “benign.”

For a cancer patient, this is the best word in the world. It means everything’s OK. Everything checked out. You can actually exhale.

In my anxiety-ridden mind, I’d already diagnosed myself with ovarian cancer before this procedure. I’d gone as far as mentally preparing myself for the news, trying to wrap my mind around what that would mean–more chemo, more invasive surgery, maybe radiation, maybe death. This is what life is like post-cancer. Worst-case scenarios running through the mind all the time.

But thankfully, this is one I no longer have to worry about. I am so grateful.

 

Notes from the OR

/ Jennifer / 3 Comments
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Pre-op fashion

Yesterday’s oophorectomy went well. My doctor didn’t see anything that looked weird (huge sigh of relief), and the procedure was pretty uneventful. I was home by around lunchtime.

My torso scar collection has grown by three, although these are pretty small (and let’s be honest, my bikini days are over anyway). I’m sore, but it’s not unmanageable–much less pain than my c-section or mastectomy.

I’m not going to lie, it was a little sad to take a pregnancy test (standard procedure) and then sign a form confirming that I realized going through this procedure meant I wouldn’t be able to have any more children. It’s weird because even though we’d already made the decision to only have one child, the finality of all this still feels like a loss.

But what I’m gaining–some additional peace of mind–is worth it. At the end of the day, I have to remember that it’s not about mourning children that won’t be, but celebrating the gift of time with the precious child I do have.

An Ounce of Prevention

/ Jennifer / 4 Comments

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In what has started to feel like a regular occurrence for me, I’m preparing for another surgery this week.

This time, I’m going under the knife for an oophorectomy, which sounds completely made-up but is the medical term for removing the ovaries. My fallopian tubes will be removed, as well.

Because of my BRCA2-positive status, I am at a higher risk of developing ovarian cancer. And ovarian cancers often spread and even sometimes start in the tubes. So, they all have to go.

The procedure will be done laparoscopically, which I’m told makes it much easier. My OB/GYN, who will perform the surgery, assures me it’s a very standard procedure.

I have mixed emotions about it. On the one hand, I’m just ready to get it over with. I’m ready to have one less body part to worry about possibly sprouting cancer.

On the other hand, I’m completely freaked out. Not really about the procedure itself, but more of the what-ifs. My greatest fear is waking up to somber faces telling me they found something abnormal. A tumor. Weird cells. More cancer.

I’m also feeling a bit sad about what this procedure means for me. I was done having children, but once this operation is finished, there is no possible way I could ever change my mind on that. There’s a finality to it that hurts a bit.

On top of that, my doctor warned me that I will pretty much go into menopause immediately after the surgery. I’ve been in a chemo-induced sort-of menopause for months now, so I’m hoping the side effects won’t be too bad. Mentally, this is another one I’m having a bit of a hard time with because I shouldn’t have to be dealing with this now. I’m too young. It’s too soon.

Last night I had two dreams about the surgery. There was the standard stress dream of not being in the right place, not being able to dial the numbers to call and let them know, etc. Then I dreamed that I was going in not to just have my ovaries removed, but to have gender reassignment surgery to transition me to becoming a man. I’d already had my breasts shaped into the most incredible set of pecs I’ve ever seen, and I was sporting a short brown hairdo. Hoo-boy, chew on that one, Mr. Freud.

While I have no control over the completely bananas world of my dreaming subconscious, I’m trying to keep the pity parties to a minimum. Yes, all of this is incredibly crappy and unfair. But, I’m also really lucky. I have the chance to possibly prevent another bout of cancer, to possibly save my life. For that,  I am truly thankful.

 

 

 

 

 

Ultra-Sad

/ Jennifer / Leave a comment

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Last month I started taking Tamoxifen, an estrogen blocker often prescribed to women with breast cancers that are estrogen receptors, like mine. This medication helps block the hormone from feeding cancer cells, and works to reduce recurrence.

As one would expect, though, any medication that tinkers with hormones can have some wonky side effects. I’d heard some horror stories–side effects so bad that the patients had to discontinue or find an alternative medication–but my side effects have been pretty minimal, thus far.

That said, I started noticing some mild pelvic pain a couple weeks ago. Nothing major, just a little pain/pressure, mostly when I was walking or active.

Old me would have just ignored it and moved on. New, paranoid cancer patient me lets very little go unchecked. Though inconsistent, the pain persisted for more than a week, so I called my OB-GYN’s office to let them know (per the instructions on my Tamoxifen patient leaflet).

Yesterday, I went in to have everything checked out.

Going to my OB-GYN office is kind of a sad experience for me nowadays. The place is teeming with women at various stages of pregnancy–the newly-pregnant, with their nervous significant others in tow; the second-trimester gals, all cute belly and glowy faces; and the almost-done ladies, bellies about to pop with that third-trimester look of being completely over feeling like a beached whale.

I’m done having children. I’d made that decision long before my cancer diagnosis. But I still can’t help feeling a pang of jealousy when I see these women. I loved being pregnant, and there are days that I would love to be pregnant again, but that’s not in the cards for me.

This visit only intensified those feelings. After my exam, my doctor sent me to the ultrasound room for a quick look-see just to be certain everything was kosher.

The last time I was in this part of the office, I was one of those pregnant women, excited to get a look at my unborn child. I absolutely loved getting ultrasounds. It was so cool to see my little guy moving around inside me. That blurry black-and-white screen was full of promise and excitement.

Not so much this time. As the tech went to work, I watched the screen nervously, this time hoping my womb and surrounding area were empty. She made a few measurements, and when I asked questions, she gave me some vague answers–standard protocol for ultrasounds. But sensing my terror, she reassured me when she was done that it looked good.

My OB seconded that opinion when we met in her office shortly thereafter, going so far as to say that my uterus and ovaries were “textbook perfect.” Too bad these model parts are where no one can see them!

I left the office with a sense of relief tinged with sadness. Though my decision to be one-and-done was already made, a part of me still mourns the end of this chapter of my life. And I’m angry about the no-turning-back finality that my cancer adds to that ending.

 

How It All Began

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When I gave birth, one of the things that was really important to me was to take a few minutes of free time (precious stuff with a newborn) to write down my son’s birth story. I wanted to record how it happened not only for him, but for myself as well, before I forgot it.

When I first started this blog, I was so shell-shocked from my diagnosis and the ensuing whirlwind of doctor’s appointments and treatments that I sort of glossed over the full story of how it all happened. And like that birth story, I want to record how it all went down. Right now I feel like I’ll never forget it, but as I’ve learned, time tends to blur memories and things can get fuzzy enough to disappear completely from your mind.

I also wanted to write this post in the event that some newly-diagnosed person or person with a suspicious lump happens upon this blog in their internet searching (I know I ended up reading a lot of blogs that way). I was hungry for information, but even more so, hungry for the experiences of others. I wanted to hear the good and the bad–I wanted to be prepared either way–but mostly the good, as I was looking for some hope to go along with my cold, hard facts.

So, in that spirit, here is my cancer diagnosis story (it’s long–sorry):

I don’t remember the exact day I noticed the lump, but I remember being aware of it around June of 2016. I’d love to say I was one of those conscientious people who did regular self-exams, but that’s not true. I noticed it in part because I was still breast feeding and more aware of my breasts in general, but also because it was pretty prominent–a hard little lump along the outer side near my armpit.

I honestly thought it was some kind of clog associated with breast feeding, or maybe a cyst. I remember thinking it felt different, so I decided to go to my OB-GYN to get it checked out.

I finally got around to doing that the week after July 4th, and the PA who felt me up that day said she thought it was probably nothing, but sent me to the breast center just in case. I was still oddly calm and sure it would just be some kind of benign thing.

At the breast center, they brought me in for an ultrasound. I’d had several ultrasounds before when I was pregnant, and I loved them. Seeing my baby moving around inside my body was one of the most amazing things I’d ever experienced (even if I needed help seeing him sometimes–those ultrasounds aren’t the clearest things!).

This was far less fun. As I laid on my side, the radiologist pressed the ultrasound wand against the side of my breast, pointing to the image on the screen.

“So, here is the lump,” he explained in a very calm, even tone. “Notice how it has jagged edges. And these little white spots here are micro-calcifications.”

I nodded and didn’t say much. I had no clue what any of it meant. Had I done any research beforehand, I probably would have lost my shit right then and there. Jagged edges and micro-calcifications are both signs of cancer.

When he was finished, he told me it looked suspicious, and they wanted to do a mammogram and a biopsy. Amazingly, there was an opening for the biopsy that afternoon, but the nurse told me I had some time before that appointment, so I should go get something to eat.

Oh yeah, food. I’d completely forgotten about lunch. Of course, I had zero appetite, because the impending biopsy completely freaked me out. I stumbled out into the blazing sun and somehow made it to my car. And then I promptly collapsed into a sobbing mess.

I somehow pulled it together enough to drive to a convenience store and buy a Cheerwine (nothing comforts me like my favorite sugary drink), and then I called Rodney, crying, and told him everything.

I dried my tears, finished my soda and staggered in a daze back up to the breast center. The mammogram was first. Being only 37 with no family history of breast cancer, I’d never had one. And I’m here to tell you the rumors are true–they’re no fun.

After that, I was taken to a small examining room for the biopsy. Continuing the theme of the day, this also was zero fun. I laid on my side and got a shot of local anesthesia. It always takes more than one shot for me (so tough!), but once I was sufficiently numb, the radiologist went to work. I could feel the pressure of the needle going into my body, and then the pulling as the device clicked and sucked out bits of tissue from the tumor.

The biopsy was done in a few minutes, and they sent me on my merry way to wait for the results. Of course, it was my luck that this all went down not only on a Friday–meaning I’d have the whole weekend to agonize–but also the Friday before I was to fly to Chicago for a Monday business trip. I spent most of the weekend consulting Dr. Google, who all but confirmed my fears that this was no ordinary benign occurrence.

As you may have read in one of my first posts, I got the news while on a layover in the Atlanta airport. Yeah, that sucked.

I had my first appointment at the cancer center the following week. I’d had some long doctor’s appointments before, but nothing like the four-hour marathon that is the first cancer consultation. On the one hand, it’s nice that they could assemble my team (it never failed to freak me out that I needed a full team to treat me) at one time instead of making me return for half-a-dozen individual appointments. But on the other, such an appointment makes for a pretty grueling morning.

My oncologist was the first doctor to visit with me and Rodney. After introducing himself, he informed me that I had been the subject of a weekly meeting of the area’s breast cancer doctors. Knowing you need a team is one thing; finding out your case was the talk of all the doctors in the area? Absolutely fucking terrifying. I was sure I was about to die.

Turns out, I was of interest because of my age and relative good health. My oncologist went on to tell me my stage (Stage II A) based on the fact that my tumor was around 2.5 cm and had not spread to my lymph nodes (that they could tell). He also told me that it was estrogen- and progesterone-positive (which means those two hormones essentially feed the cancer) and that it was HER2-negative (a protein that can be over-expressed in tumors). The growth rate was at 50%–fairly high, but not “NASCAR speed,” as my oncologist put it.

After telling me all that, he outlined my treatment plan (which changed due to my BRCA2-positive status), and answered the litany of questions Rodney and I had. The rest of the appointment is kind of a blur to me now. I saw my surgeon, the radiation oncologist (whom I never ended up seeing for treatment), nurses, a dietitian, a physical therapist–like I said, it was kind of grueling.

It’s crazy to me to think that day was almost seven months ago. I’ve had chemo, surgery, several MRIs and more doctor’s appointments than I can count since then. I’ve lost my hair and grown it back (well, it’s in process). And best of all, I’ve had a clean pathology report. I’m still not finished with this journey, but man, I’ve come a long way from the beginning.

 

 

 

 

 

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.

 

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.